Showing posts from January, 2021

Barriers to Connection

  BARRIERS TO PHYSICAL HELP There are many barriers to getting physical help, when you have Severe or Very Severe ME. What SHOCKS us is how little the issues below are recognised, understood or thought through by Professionals and Services. This list is from my new book, “Severe ME More Notes for Carers” : How can you wear comfortable clothes that you feel good in, if the material on your skin irritates, hurts, feels as if it is you crushing you? How can you protect your feet or find suitable footwear when any pressure on your feet is agony? How can you keep warm in bed if the lightest sheet over you hurts you? How can you cover your eyes to protect yourself from light, if you cannot tolerate sunglasses on your nose or eye masks on your face? How can you protect against torturing sound, if you cannot put earplugs in your ears, due to the pain of pressure in your ears or wear ear defenders on your ears or cope with the pressure on your head, due to hyperesthesia? How can you get back or

Severe ME More Notes for Carers now available as a paperback on Amazon

 It is my joy to announce that the new book: Severe ME More Notes for Carers is now available from Amazon as both a Kindle ebook and in paperback. For more information about the book you can see the webpage and watch the videos. To purchase on Amazon: Paperback: Kindle: To purchase the paperback from Lulu: Don’t forget to look out for any discoun


It has been an impossible, agonising struggle, under the most horrendous circumstances, but I so much wanted to produce a detailed, comprehensive Care Guide to Severe and Very Severe ME, especially with NICE in the offing. I am very proud then to announce the publication of my new book "Severe ME: More Notes For Carers" on Kindle and also now in print. For more information, see: Hoping it brings insight and understanding to many. The book is dedicated to our dear friend Merryn who died from Very Severe ME. She will always be remembered.. The lives of the most severely affected should never be forgotten.