Everyone knows that the mitochondria is the powerhouse of the cell. And we know that ME significantly affects the mitochondria. So by unofficially renaming it to Mitochondrial Energy (ME) disease, it helps unfamiliar readers to understand the primary mechanism at a glance, without having to research it more. Easier public understanding can lead to better public image and more donors.
I like the idea, but I wouldn’t feel comfortable until we have more evidence.
For now we mostly have evidence that the mitochondria is doing weird stuff (abnormalities), such as using different fuels than healthy people, but we don’t really have evidence that that results in less energy production. Maybe DecodeME will shine a light on that? (Obviously, subjectively, as a patient it really does feel like we have a severe lack of energy production, doesn’t it? But we don’t have biological findings that show why we feel that way yet).
Anyways, I’d say we wait until we have something very solid before thinking about renaming.
Going with your theme, and the minimal biological evidence we currently have, what about “Minimal Energy” (ME) or “Missing Energy” (ME) Disease? It’s descriptive and not assuming a mechanism.
Yes I like your ideas. I had another idea, “Metabolic Energy” (ME) disease. Something along those lines would better reflect the current understanding of myalgic encephalomyelitis than the first name it was given, and might be easier to understand for laypersons.
ME stands for:
- Myalgic encephalomyelitis (official)
- Minimal Energy
- Missing Energy
- Metabolic Energy
Referencing the same disease known officially as ME/CFS