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SEVERE/VERY SEVERE ME : THE NEED FOR PROPER SYMPTOM IDENTIFICATION.

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Living tortured, isolated, invisible lives of silent agony, on the furthest edges of existence, people with a Severe/Very Severe ME diagnosis are some of the most tormented and isolated, neglected people in the UK. In this new article we explore the need to correctly identify symptoms and investigate pathology. YOU CAN DOWNLOAD IT HERE : https://stonebird.co.uk/psi.pdf

Very Severe ME: It’s Time for Something New!

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(Guest blog for the ME Association  ) I have cared day and night for my wife who has lain in unspeakable torment, torture and agony, for twenty-six years. The personal cost to us both because of M.E. has been enormous. “People I have known, dying of cancer, have still enjoyed a better quality of life than my wife.” Communication is broken on every level. As soon as she has spoken, she forgets what she has said. If I speak or ask a question it can cause unimaginable confusion and head-pain, shaking spasms, and deterioration. Thoughts and memories are mostly beyond access. I must represent her and speak for her whenever the need arises. Literally everything hurts her and risks deterioration to partial or total paralysis. One wrong movement or noise and the whole day is ruined before it has begun. People simply do not understand. Who can possibly imagine living in such an assaulting and broken world for decades, without adequate investigation, care or support? We receive no support from the…

FOCUS ON THE MOST SEVERELY AFFECTED

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WHY A MOMENT APPROACH IS REQUIRED :
People with Severe ME are roughly 25% of the ME population. People with Very Severe ME are roughly 2% of the ME population. For them there is little comprehension of what they go through or how to safely help and interact with them. Some will be more able than others, in limited ways. People’s experience may vary from day to day and moment to moment but always in the context of severe illness and multi-system dysfunction. For some there is no let up to the high intensity of their symptoms. Their needs are complex. There are a number of paradoxes that may only become apparent when you try to engage with the person. I need help, but.... there is always a but, especially with those people who have the most severe forms of Severe ME. Receiving care is not easy, straightforward, nor is it necessarily obvious as to how and when to interact
safely and in the best way for the person. Everyone experiences their symptoms uniquely, yet there will be common exp…

Severe ME Day: A Call to Act with Truth and Integrity

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What Can We Say ?

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Severe ME Understanding and Remembrance day, August 8th, is an incredibly important day for us, for it focuses our attention on all the amazing people known and unknown, who have suffered horrendously, often for many many years and have died with ME. We hold them in our hearts. We never forget them. The injustices and the sheer level of suffering they experienced can never be forgotten. Their friendships and their memories deserve to be remembered. We also remember the people who loved and cared for them, the pain they witnessed, the losses, the struggles, the suffering they too experienced as they tried to get justice, give comfort and support, gain right medical input, speak out, to raise awareness of this devastating neurological disease, tragically neglected and ignored for decades. Each person's loss, echoes through the whole ME community and brings an unhealable sadness that they are no longer here; we affirm that all their loveliness, their passion for life, their commitment…

Regarding the New NICE guideline on ME/CFS

This is to inform the ME community that I did not feel able to contribute, after all, an  expert testimony, to the new guideline on ME/CFS and have regrettably withdrawn from the process.

CRUSHED

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Saint Patrick’s Day is special to me, not just because I am Irish, but because so many remarkable events in my life have occurred on this precious day. Not that it makes a difference. Today like ever other day for the last 26 years, my wife will lie hideously crushed under the weight of her illness, unable, most likely to even bear my presence, let alone celebrate; we would give anything, to celebrate together, for March 17th is the day I arrived back in England from living in South Africa, many years ago. I remember looking down from the plane, wondering who I was going to meet...... Today Linda will struggle and her struggle will be terrible to witness. Maybe I will have a small whiskey later in memory of my grandfather’s birthday, maybe there will be some kind of easier moment ......