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THE MISREPRESENTATION OF PARALYSIS IN PEOPLE DIAGNOSED WITH ME/CFS.

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  THE MISREPRESENTATION OF PARALYSIS IN PEOPLE DIAGNOSED WITH ME/CFS. Stonebird. Paralysis is a symptom that is rarely highlighted in the literature for ME/CFS. Why is it not being properly investigated or researched? Why is it so often denied and underplayed? It is easy to use the word paralysis, but does that mean the same experience and cause for each person? People with an ME diagnosis, who experience temporary stroke like episodes or muscle weakness and partial or full temporary paralysis, may have a missed diagnosis due to poor investigation and poor diagnostic criteria or even a misdiagnosis. There is a real danger of misrepresenting the true nature and reality of a person’s temporary paralysis by using words like ‘paralysis -like’ or you just ‘ feel’ paralysed. This opens up the possibility of misinterpretation and misunderstanding, as if it is somehow all in your mind or only feels like paralysis and opens the door to psychiatric misinterpretation and mistreatment or FN...
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The Chaos of Agony

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  MORE THAN TORTURE, THE CHAOS OF AGONY When I am in the chaos of unutterable indescribable agony the power of the physical experience is huge, vast and all encompassing. I cannot bear the moment I am in. There is no other moment than this one and it seems to spread out to all eternity in an eternal moment of excruciating torture. I don't really have the words to describe the experience. It is more than torment, more than torture, more than indescribable, more than intolerable, more than unacceptable, more than completely unbearable. It is screamingly hostile and negating. It is barbaric in its cruelty. It is exquisitely diminishing. It is almost completely incomprehensible in its agony it is so vast, so punishing, so pure, so bleak, so empty of life and full of sensations that is beyond endurance. All focus must be on coping, on bearing the unbearable, on remaining, on the pain itself, for there is no place that is not pain. There is no place that is not agony, there is no place ...
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New article out

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  SEVERE ME UNDERSTANDING AND REMEMBRANCE DAY Aug 8th We were asked by ME Group Australia to write an article on finding Hope in this place of endless, severe suffering: You Are Precious And Your Presence Matters, a Reflection on Hope. Greg and Linda Crowhurst When you are diagnosed with Severe/Very Severe ME, hope is an ephemeral, delicate thing. If you hope to be immediately better, or return to your previous life, those hopes will, most likely, be dashed, if the diagnosis is correct. When I was asked to write this article for ME Group Australia, I asked Linda, my wife, what hope means to her. She commented : “Hope for me cannot be about anything specific, unless that specific thing is actually achievable, or potentially achievable or possibly achievable at some point in time, even if it feels unlikely . For me hope comes in small things, not big things. Hope of a better moment, hope to not be irritated, hope to not be distressed, hope not to be tormented in every single mome...
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New art exhibition for Severe ME Day by MEAI

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  What an incredible presentation this is! We are deeply moved by the depth and breadth of art on display, despite the severity of suffering people endure without relief. We are really impressed with the extremely beautiful presentation - and we are so proud to have contributed! 1. Slideshow   View a Slideshow of the exhibition and manage the viewing yourself:  https://bit.ly/ 4lX1fOe Video   Please see our online art exhibition via YouTube Video (approx. 55 mins long).   All you need to do is press play or pause as you wish.   https://youtu.be/Tl5e1hzAZa4   3. Exhibition via PDF Document   You can view the exhibition entries via Document in your own time. August 8th Exhibition 06 08 25 Final.pdf    
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How do you find hope in a place of endless suffering ?

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  AUG 8th SEVERE ME UNDERSTANDING AND REMEMBRANCE DAY How do you find hope in a place of endless suffering ? We have written a reflection for ME Group Australia, based upon our belief that no matter what, “you are precious and your presence matters”. The article can be downloaded here: https://megroupaustralia.org.au/.../250808-Greg-and-Linda...
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I Didn’t Want To Wake You Up

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  https://www.youtube.com/watch?v=3BAlps9oN4k I am not sure anyone could imagine how bad it is. However one of the worst places is lying awake at 3am, not knowing how to help her in her agony. My heart breaking, I wrote this love song: ‘Last night I awoke and watched you While you slept  Wondering how much pain you were in And if a coffee would help I didn’t want to wake you up I couldn’t tell if you were asleep or not All I could do was Lie there and try to Find some rest myself Before another day of endless torture Begins Praying for a miracle for you Dear Lord would you help us both get through The emptiness of the hours ahead Help me as I lie in this bed Praying for A miracle For you I got up silently To make a note of this song I had to do it right away Before it was gone But love still burns Inside of me I pray one day I might walk with you Once more upon the beach Like we used to do When you and I Would keep each other warm On misty days Praying for a miracle for you De...
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August 8 The Pain

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  AUG 8th The pain pierces every part of me. It screams. It burns. It  writhes. It itches. It crawls. It intensifies. It throbs incessantly. It demands total attention.
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