Hello, I'm a new member.
I am both an M.E patient and advocate. I also own an online training company that teaches about M.E./C.F.S.
I would be interested to hear from any OT who has looked after M.E./C.F.S patients. How did they respond to your support? What support did you offer and did the support have positive patient outcomes?
Thanks!
Hi @Sally. I know your forum has been up for a while now - but a very helpful Facebook follower of the Hub, called Lucy Fludrum, has shared some thoughts for you. She's asked me to share with you on her behalf: "Sue Pemberton's book Fighting Fatigue (which includes base lines of activity, pacing and grading exercise very very gently) is so helpful to people. Sue is an OT herself (she founded the Yorkshire Fatigue Clinic). The book is accessible to so many people, partly as it's written with a comfortable font and tells you to take rest breaks sometimes. The activities in it are gentle and manageable. It's an empowering read... As part of my reply to Sally (and please feel free to add this next bit on): I explained I'm admittedly not even an OT myself (I'm a therapist though - counselling), but I used to have ME/CFS, recovered thankfully, and have been supporting many people with ME/CFS over several years, within a charity. My own recovery was thanks to many factors including the Fighting Fatigue book as well as the brill NHS OT I'd had, who had recommended me that book. The book's co- author, Catherine Berry, used to have ME/CFS herself but attended Sue Pemberton's Yorkshire Fatigue Clinic I believe, and really got a lot better.
An amazing book truly. I have a friend and aunt who are both OTs and I believe they would strongly approve of the guidance and support given in this book as well. It's not only helpful for people with ME/CFS but may also be very very useful to anyone else with ongoing fatigue as a result of another illness. Potentially Long Covid as there are certain overlaps with ME/CFS."
Hi Sally, My practice has a special focus on Sleep health and I often come across more chronic fatigue type presentation. I have done a course here in South Africa to familiarise with central sensitisation etc. Post-Covid you must be seeing a lot of this? Do you also see Persistent Pain Syndrome patients?
Hi @Sally Callow I am working with a client currently, I'd love you speak to you further if possible?
Hi @Sally! Thanks for your Forum contribution and query. We'll bring this to the attention of fellow Hub Members around the world tomorrow. The Occupational Therapy Hub Team hubteam@theOThub.com