Not sure where this thread should go. Apologies if in wrong place. Someone on another thread mentioned the fact that the public perception is that HIV kills, and ME/CFS... well, just makes you a bit tired. Therefore it's not a threat. Maybe it's time to redefine the disease, not just the name. Make it scarier. Something that will make people sit up and notice. Why don't we focus more on the neuropathic symptoms. In my case the neuropathic symptoms are considerable. Memory loss, cognitive problems, sensory disruption. Immune dysfunction is also a major issue with a potential link to oncological issues. And a host of others I can't remember. I have had SPECT scans that shows progressive and localised brain dysfunction. So why not call it brain wasting? That would get people to sit up and listen.