If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

[Peter T]

For younger people I suspect as long as they are sensible reconditioning will be fairly straight forward. Indeed when I had periods of varying degrees of remission in the past I was always surprised how easy it was increasing physical activity even after years of being housebound.

But now approaching 70, I am less optimistic about my prognosis even if we have a successful treatment. I am developing other age related conditions that will presumably continue beyond any treatment. Dependent on what any treatment is addressing, will some symptoms remain? If a treatment addresses say immune issues, will cognitive impairment remain? Will secondary issues such as food intolerances or migraines or IBS continue?

For me premorbid functioning was as a very active and fit 30 something, but even complete remission for an unfit deconditioned 70 year old with additional conditions will be very very different.

 

[Kitty]

On a personal level I'd be interested to find out whether I recovered the power in my legs.

I'm not sure it's entirely ME/CFS related, because it only affects my upper legs and doesn't change with PEM or having a better day. Might be wrong, though.

At the moment my vision of a post-treatment me is still needing a wheelchair because of that, but all the same being able to pick up my swim training, getting involved in more wildlife surveying, and doing more music. I might also be able to work on my postage-stamp sized garden a bit.

If it turned out I didn't need the wheelchair, I'd be able to travel outside mainland Britain too. I'm never going to want go far, I like my own fireside too much, but it'd be good to visit some of the music festivals in Ireland.

I wouldn't envisage a lot changing, but it should be easier to do the things I most want to. I'd be better at them without the severe brain fog too, and I wouldn't have to spend 85% of my waking hours recovering from stuff I did in the other 15%.