"Caring for people with ME/CFS who are bedbound" (2023)

I'm interested in what our members with severe ME/CFS or who are carers of people with severe ME/CFS think of this.

I thought it was pretty good, but there's an odd unevenness about the assumptions around severity. The title is pretty specific "Caring for people with ME/CFS who are bed bound", and of course that should cover people who can get out of bed occasionally, for example to make it to the bathroom, as well as people who can't. But the document talks about setting up a stool in the kitchen so the person can prepare meals which sounds more like a house-bound situation.

There isn't any discussion about what you do if the person can't eat enough to maintain weight, other than contacting a health professional. I would have thought a brief note on what options there are in that case and perhaps some links with more information would be useful. I think some encouragement for carers to consider the options early is probably warranted, so that the person with ME/CFS doesn't get into a dangerous condition.

There's just this on exercises to maintain range-of-motion:

It would have been good to see a link to a suitable resource on this.

There's good tips for bathing and some good ideas about setting up a room.

So, I think it's a good start, but some more consultation with people with experience of this situation could make the next iteration of the document even more information rich.