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Risk Assessment for interactions with people with Severe and Very Severe ME/CFS -an essential and important inclusion in the new NICE Guidelines

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  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

Aug 8th Unimaginable Suffering

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  The depth of the suffering in Severe /Very Severe ME is unimaginable until experienced

Aug 8th Remember Me

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Aug 8th Remember Us

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Aug 8th Remember Them

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Aug 8th Remember Us, Remember Them, Remember Me

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 Aug 8th. We have personally known 16 people diagnosed with Severe ME who have died. They will always live in our hearts

Wasteland

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  Wasteland, a video song from decades ago. “Do you know just what it’s like? ”  28 years of very severe to profound disability. https://m.youtube.com/watch?v=Z1z5O_cgQ7I