My mother died of sequelae from Guillain Barre... Basically, in Guillain Barre, there is some sort of autoimmune process (often after an infection or vaccine) whereby the myelin sheaf to the nerves is attacked causing pain, difficulty in coordination, and a rapid paralysis over a period of days. If the disease is diagnosed quickly enough, the patient can be treated with immunoglobulins and/or plasma pheresis. The rest is supportive care and rehabilitation. So, a patient who has progressively been paralyzed to the point that s/he can not breathe on his or her own, the patient will have to be on a ventilator. Slowly, the myelin recovers fully or partially, and as the skill increases, the support is withdrawn (e.g, as the patient recoups the ability to breathe without ventilation, he or she is weaned off the vent). However, this is a rare disease, so it is often not diagnosed quickly enough. People who reach a point of full paralysis have less positive prognosis. Patients may undertake months to years of rehabilitative therapy in order to recuperate the physical/adaptive skills that they lost. Many (most) people are left with some level of residual physical disability, some quite sever, and many fatigue easily, even when recovered. It is a truly terrifying illness, though perhaps there are low-grade versions of this illness that do not ever get diagnosed but cause the persons suffering with it a great deal of CFS-like symptoms. A "recovered" person who has had Guillain Barre may have their illness experience acknowledged, yet have the residuals dismissed. (They no longer look sick, they can walk again (or roll their wheelchair); numbness in extremities, periferal weakness, and exhaustion can't be seen, as we all know.)
I'm sorry, but I don't think that being in an ICU for months not being able to move at all is somehow an enviable situation to be in, even if everyone does recognize that the patient is quite ill. "Locked-in" patients may be seen as ill, but they have difficulty communicating, so often their cognitive skills are doubted. Why must be we envious of people with other, hideous neuro-immune illnesses? The last few months of my mother's life were terrifyingly awful for her, and she had suffered from a range of other chronic health conditions for many years prior. Would it be worse to have had CFS for years? I don't know. What I do know: There are innumerable shades and shapes of awful...