Stonebird

TORTURED BY THE SIMPLEST interaction, normality is beyond people with Severe/Very Severe ME. The risk  is great; those who would help are often the cause of harm and deterioration, through their lack of awareness and understanding. My new book, " Severe ME Featuring Justice for Karina Hansen " a massively updated and expanded version of my first book- this time featuring the voices of people with Severe ME, Carers, Advocates and Professionals from all around the world,   is written to minimise that hurt as much as possible. You need to  understand how much pain you  can cause, when even a whisper can  drill into the person’s brain, sending sharp  shards of pain  crawling round their  head , when any noise can be a torture that makes the person feel like as if they are being hit repeatedly with a sledge hammer. My wife writes : "You need to understand why you can speak to them but are tormented by the painful sound of their voice and the ...

Let me be honest, I do not have any optimism for people with Very Severe ME . We are in an ME minority.Despite 20 years of severe  illness and pushing year in year out to get change, raising awareness of the truth, showing what real ME is like,trying to combat the psychosocial myth,the state of ME services in the UK is frankly nowhere. And I no longer have  hope that I will ever get a genuine medical ME consultant who knows more about Severe ME than we do.  There are, let us face it, no NHS ME consultants separating ME from CFS that I know of and not colluding with the psychosocial lobby  on some level. There is no one willing to visit at home that I know of without huge cost. I am frighteningly ill and so tormented by noise and paralysis, pain and  hypersensitivity that I cannot hope to travel to a consultant. But then why would I even if I could? Please tell me there is real help out there.  Please tell me that someone can help me with my noise se...