it was (never) meant to be

what does the name mean? my = muscle. algic = pain. encephalo = brain. myel = spinal cord. itis = inflammation.

ME is classed by the WHO as a neurological disease. the Decode ME study found immune and neurological genetic markers in its analysis of 15,000 subjects.

ME is more complex than just fatigue. many experts and patients dislike the old name ‘chronic fatigue syndrome’ because fatigue is only one part of the condition, and it’s the least unique trait.

the most unique trait is post exertional malaise, where, 24-72 hours after any exertion outside the patient’s limits, there’s a peak of worsening and new symptoms affecting multiple bodily systems. PEM often involves immune activation, such as sore throat and a low fever, and a loss of muscle recovery after exertion, measurable through CPET testing. (normal muscle recovery takes 200 mins, but muscle recovery in ME takes days, with some patients taking longer than a year to recover from a single exertion.)

ME can range from mild to profoundly severe. these severity levels are only within the context of ME, not general illness; ‘mild’ ME is still a severe illness as it includes a 50% loss of functioning. ‘mild’ ME can feature debilitating pain and complex symptoms and can turn basic activities of daily living into a marathon.

severe ME is (naturally) even more physically limiting than mild ME. people with severe ME are largely bedbound and only rarely able to leave their room in a wheelchair, and usually can’t perform their own care tasks, needing help dressing, washing, and eating.

in very severe ME, the person may be unable to leave bed at all and may not be able to speak, swallow, roll over, sit up, read, or be exposed to light or noise, for years or decades.

ME has a measurably lower quality of life than any other illness studied, including cancer and stroke.

And then you have scenes like, Rocky is telling Grace the Eridian scientists are ready to work on the Hail Mary to take him back to Earth, and you can tell he's nervous to tell him this by the way he shuffles his claws in the sand, almost like he doesn't want tell Grace, because he doesn't want his friend to leave but knows its his choice, so when Grace says he wants to think about it, he perks up and says 'take as long as you need', not just because its a big decision, but he wants his friend to stay even if its a little longer and the fact that he's not choosing to immediately leave makes him happy

I believe (based on clips I've heard) Rocky does express this in the book to Grace, ("Speaking selfishly, I hope you dont go" - something like that) but they didn't need to have him say that in the movie, cause you could tell by his body language

But also, and this is really important to keep in mind regarding bigotry that still causes in many ways larger problems, that the structural problems are not actually fixed.

If you go to any computer lab or public library, the mice will be on the right side of the computer. Sometimes they can be moved. Sometimes they can't. Many computer mice are curved to only fit in right hands.

It is impossible to find lefthanded scissors without going to a specialty store, because most scissor makers don't even make them. And it's not just a matter of grip; the slicing side of the blades is obscured if you use righty scissors in your left hand, so your cut is off.

All those signing pads with the little chained styluses? Almost always on the right side, often not even long enough to stretch to the left. Makes signing for lefties extremely difficult.

I caused actual muscular problems in college having to twist around in order to write at right-handed desks in college when there weren't enough lefty desks--and there never were. Some classrooms didn't even have a single one.

I could go on.

this text post felt very farcille-core :")