ME/CFS

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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 [email protected]

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.

founded 8 months ago

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I think we should describe it as Mitochondrial Energy (ME) disease when talking about ME for public education and outreach. (lemmy.blahaj.zone)

submitted 2 months ago by [email protected] to c/[email protected]

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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.

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[–] [email protected] 2 points 2 months ago

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