Thanks for this thread @dan062, very interesting.
My condition has been relapsing-remitting in the past. At the onset of my most recent relapse/crash precipitated by a viral infection or reactivation, I thought I had vasculitis. Mouth full of ulcers, ataxia, weakness down the left side, severe dysautonomia to the extent where standing up was impossible, not to mention cognitive dysfunction. Only saw a neurologist several months later by which time it had all settled down to the usual ME/CFS misery we're all familiar with, the subacute situation with few if any physical signs. Brisk reflexes and mild hemiparesis were noted. She was visibly taken aback when she started doing the actual neuro exam. It was quite funny watching her go from not believing I was sick when she walked in and I began describing my symptoms to being freaked out when she saw the hyperreflexia. After all, a young woman describing non-lethal neurological symptoms must be hysterical, right? No diagnosis was ultimately offered. Later I saw another neuro who diagnosed POTS. I also saw a rheumatologist who thought maybe lupus and treated it as such with steroids with no real benefit.
I don't think what's happening to us is an inflammatory process, at least not in the classic sense of the word, or else this would have become apparent a long time ago and we wouldn't have been be carted off to psychiatry. So the -itis in ME does us no favours when trying to gain credibility/legitimacy in the eyes of the medical profession. But myalgic encephalopathy describes very well my lived experience. I suspect the vascular dysfunction is a key piece of the puzzle but it's not vasculitis and trying to shoehorn this into one of the "accepted" disease categories just because it resembles them somewhat is not helpful. David Bell who was a physician treating victims of one of the outbreaks of ME back in the 1980s called it vasculopathy in his book Cellular Hypoxia and Neuroimmune Fatigue which I thought was neat.
My condition has been relapsing-remitting in the past. At the onset of my most recent relapse/crash precipitated by a viral infection or reactivation, I thought I had vasculitis. Mouth full of ulcers, ataxia, weakness down the left side, severe dysautonomia to the extent where standing up was impossible, not to mention cognitive dysfunction. Only saw a neurologist several months later by which time it had all settled down to the usual ME/CFS misery we're all familiar with, the subacute situation with few if any physical signs. Brisk reflexes and mild hemiparesis were noted. She was visibly taken aback when she started doing the actual neuro exam. It was quite funny watching her go from not believing I was sick when she walked in and I began describing my symptoms to being freaked out when she saw the hyperreflexia. After all, a young woman describing non-lethal neurological symptoms must be hysterical, right? No diagnosis was ultimately offered. Later I saw another neuro who diagnosed POTS. I also saw a rheumatologist who thought maybe lupus and treated it as such with steroids with no real benefit.
I don't think what's happening to us is an inflammatory process, at least not in the classic sense of the word, or else this would have become apparent a long time ago and we wouldn't have been be carted off to psychiatry. So the -itis in ME does us no favours when trying to gain credibility/legitimacy in the eyes of the medical profession. But myalgic encephalopathy describes very well my lived experience. I suspect the vascular dysfunction is a key piece of the puzzle but it's not vasculitis and trying to shoehorn this into one of the "accepted" disease categories just because it resembles them somewhat is not helpful. David Bell who was a physician treating victims of one of the outbreaks of ME back in the 1980s called it vasculopathy in his book Cellular Hypoxia and Neuroimmune Fatigue which I thought was neat.