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I think we should describe it as Mitochondrial Energy (ME) disease when talking about ME for public education and outreach.
(self.myalgicencephalomyelitis)
A community for people with Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (CFS). ME
Since Lemmy is small, this community also serves as a hub for common comorbidities of ME/CFS. Long COVID (Post COVID), POTS (Postural Orthostatic Tachycardia Syndrome), OI (orthostatic intolerance), MCAS (mast cell activation syndrome), and more!
For those who want an even more general community, check out !chronicillness@lemmy.world
Also please DM me I need to add some mods!
Rules: Instance Rules, No Ableism + No quackery or denialism. Empathy first, is a must to participate. No unsolicited advice.
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:
Referencing the same disease known officially as ME/CFS
How about My Entirebodyhurts.