My 33 yr old daughter is 95% bed bound. Ill for 2-3 years, and progressively getting worse though we are trying treatments with a ME specialist in NY. The caretaking support at my local hospital seems to have no knowledge or experience with ME. I'm looking for resources for caretaking info for severe ME - both support and practical advice. Long term patient myself - so at least I know lots about the illness - but her needs are greater than mine were at my worst.