nandixon
Senior Member
- Messages
- 1,092
The problem for me is that the name they came up with doesn't convey sufficient medical or scientific seriousness and weight given how debilitating and life destroying this illness can be, and that problem can be easily rectified.
True ME/CFS (with PEM present), whether it's acute onset or gradual onset, almost certainly has to have, at a minimum, some type of immune component to it, so they could at least use terminology relating to at least that one aspect for the new name - even if it's true that other diseases have an immune component as well.
Otherwise, it's like calling multiple sclerosis "Systemic Nerve Signal Intolerance Disease." Or calling myasthenia gravis "Systemic Repetitive Motion Intolerance Disease." Or calling congestive heart failure "Systemic Narrow Artery Intolerance Disease." Etc, etc.
No name is going to be correct until they find the actual causes for this illness, but they can at least make it sound like a real illness and closer to the real nightmare it is for so many of us.
I proposed "Systemic Exertional Neuroimmune Disease" elsewhere to be as close as possible to the IOM name, and I don't care if it's that or something else, as long as it sounds like a real disease.
True ME/CFS (with PEM present), whether it's acute onset or gradual onset, almost certainly has to have, at a minimum, some type of immune component to it, so they could at least use terminology relating to at least that one aspect for the new name - even if it's true that other diseases have an immune component as well.
Otherwise, it's like calling multiple sclerosis "Systemic Nerve Signal Intolerance Disease." Or calling myasthenia gravis "Systemic Repetitive Motion Intolerance Disease." Or calling congestive heart failure "Systemic Narrow Artery Intolerance Disease." Etc, etc.
No name is going to be correct until they find the actual causes for this illness, but they can at least make it sound like a real illness and closer to the real nightmare it is for so many of us.
I proposed "Systemic Exertional Neuroimmune Disease" elsewhere to be as close as possible to the IOM name, and I don't care if it's that or something else, as long as it sounds like a real disease.
Last edited: