Stonebird

Ability to listen to instruction and follow it accurately. An understanding of how to be with someone with profound Light, Touch, Movement, Noise & Chemical Sensitivity without triggering a reaction. Ability to flow gently, quietly and gracefully with the person’s energy, so as not to  waste it. Skillful  contact appropriate to the person’s hypersensitivities. Honest self reflection, awareness and understanding. Skilful  timing, knowing when and when not to act. For much more information please see : Severe ME, Notes for Carers http://stonebird.co.uk/Notes/index.html

Lost Services ,  Lost Lives Stonebird response to the AHRQ Addendum. It is a welcome change, to see common sense finally prevailing in the U.S. Agency for Healthcare Research and Quality (AHRQ)’s ground breaking addendum to its 2014 ME/CFS evidence, downgrading the effectiveness of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) in the treatment of ME, as well as highlighting the inappropriateness of the Oxford Criteria to identify patients safely or at all. It is also hugely encouraging to hear that the Information Commissioner has just ordered that the PACE Trail data be released. These two game changers must be viewed in the context of what has been happening to people with Myalgic Encephalomyelitis for the last 30 years, who have been excluded from proper medical and clinical input, appropriate to the seriousness of their physiological symptoms . The term ME has been so misused for so long now, that there is little clarity about who h...

Having Severe ME must be one of the loneliest experiences on Earth You are lonely from the world Lonely from society Lonely from friends who you cannot see Lonely from family who you cannot be with Lonely from the person in the room with you because they are still out of reach to you Lonely from yourself Your body will not do as it is asked You cannot find a single thought You have lost your memory so even the daily events are forgotten Trapped away People forget what you were like Or expect you still to be the same They cannot begin to imagine your reality The fine detail is hard to comprehend Few try Others utterly fail Lonely does not really cover the experience. It is like living on another planet So far away from normal as you could ever imagine and more A planet without colour Without enough air Without enough water Without form Without people A splendid isolation in an alien environment Where the rules you learned to live by no longer apply Where often the opposite of expecta...

We remember them with kindness for it is important to honour the dead We remember them with tenderness for we cared beyond imagining We remember them with trepidation for we have to face our losses We remember them with boldness for it takes courage remembering the pain We remember them with sadness that they are no longer here with us We remember them with frustration that they were not helped We remember them with anger that they are gone For we remember All the hurt All the denial All the extremity of pain All the neglect All the harm All the harrowing moments All the suffering All the grief And we weep with gratitude For their precious lives For their tremendous personal strength For their utmost conviction For their forthrightness in speaking out For their passion in life For their compassion to others In a hostile, empty world. We remember and give thanks For who they were And who they will always be In our hearts.   Linda Crowhurst

Stonebird's contribution to Severe ME Understanding and Remembrance Day Day 2016, with love ! http://stonebird.co.uk/SevMEDay/index.html

I am delighted to announce a brand new Stonebird guide : " Severe ME : Aware Care . " Download here : http://stonebird.co.uk/buzz/index.html With love.

ME they say, "Don't worry, you'll get better in time....."   But I know better No better, after decades of indescribable suffering. ME, they say," It's fatigue." But I know better Bed bound and house bound for years on end, neurological symptoms ignored. ME, they say," Change your thoughts and you'll feel better." But I know better, I did that decades ago and am still profoundly disabled and ill. ME, they say," We will get your pain and sleep under control But I know better My pain and sleep have never been controlled for over two decades. ME, they say," Just stay in your energy envelope." But I know better I simply cannot find it. ME, they say, " No paralysis here," But I know better Paralysed daily for years on end. ME, they say," We know how to help you," But I know better They didn't help instead they harmed. ME, they say, "Don't worry, it won't kill you," But I know better So ma...