Stonebird welcomes the inclusion in the New NICE guidelines of the need for a Risk Assessment for interactions with people with Severe and Very Severe ME/CFS. Having spoken up about and raised awareness of the importance of this issue for a very long time, we are particularly pleased to see that this has been included as standard procedure. We hope it will help to protect people. This is what we have to say about RISK Assessment: RISK ASSESSMENT IN SEVERE/VERY SEVERE ME https://stonebird.co.uk/morenotes/index.html It is a massive risk for anyone diagnosed with Severe/Very Severe ME to let any professional into their life. Very Severe ME is particularly so outside anyone's normal experience that it is extremely hard to comprehend or understand or know how to safely engage with the person. Our (painful) experience, over decades, has taught us the importance of making sure that professionals behave safely. Information, therefore, should be provided to the person concerning the
How awful an experience,but hard as it is,remember this tells you more about that man than you or Linda.Karma will prevail as the Universe must balance itself out...what one gives out,you ultimately get back....I feel your pain,in every sense.The builder will leave and as ever your amazing strength will see you through.Think of the kindnesses which good people have shown you. Xx
ReplyDeleteDear Maureen, you have shown us that people do care, are incredibly kind. Your recent reaching out, your love,your ongoing support and concern, means the world to me xxxxx
DeleteDear Maureen, you have shown us that people do care, are incredibly kind. Your recent reaching out, your love,your ongoing support and concern, means the world to me xxxxx
DeleteIn my experience over 30 years of being debilitated by M.E. the greatest pain is not the physical but the beating the heart takes. It makes me acutely aware of the value of human kindness and the hell we inhabit in it's absence.
ReplyDeleteAbsolutely -"the beating the heart takes", how beautifully expressed. Thank you so much Willo.
DeleteWillo so profound what you said.That wisdom comes from the searing heat of the suffering of this vile illness for decades.....just yesterday,I experienced that "beating the heart takes"but then the kindness which gets us through another day...I wish you,Linda&Greg and all ME sufferers more kindness ......especially from the medical profession in the form of proper research,care then a cure.
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