SolveMECFS Initiative: OT The Role of Occupational Therapy in care for ME/CFS presentation

https://www.facebook.com/watch/live...&notif_id=1663261575366605&notif_t=live_video

I've only watched part as I'm doing it in sections. It's a lot of slides and talking. I've yet to get to the 'suggestions' bit where it is something I don't know as they are sensibly doing 'big picture' first given the essence of ME and that it's about 'PEM' (a hard concept for most) needs to be understood first. And that pacing isn't the type they assume based on healthy people.

I think it is good so far, and one of the main 'new' bits - where it notes 'PEM' is the iceberg under the symptoms a traditional OT would focus on (as they see them in-clinic at that time), and then emphasises that next slide that for ME 'the iceberg needs to be flipped': you are treating PEM.

It just made me realise how still far off the penny-drop of what really needs to be taking place all the services (not just medical but other services and things others have access to as back-up as 'support') and most people in the real world need to have about the condition. And I knew it. But I like the slides to give me words for it.

But watching it whilst having recently been thrown into the middle of things has made me realise how far off people are in UK. Is this the same in USA (and this is 'new') or has any of this bedded in there in any way?

This so far to me underlines the 'start from scratch' being needed on the clinics and closing down the old - particularly 'functional symptom/fatigue centres' that won't/can't ever shape round PEM (they are set-up for the opposite in how they do things and operate to such an extent you can't crowbar into that existing routine of 'ways of working') or even acknowledge or understand what it is?

Good to know other people's thoughts?