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It's Just a Fairy Story

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At all times, it is worth bearing in mind that there is not a shred of proof for anything that the Psychiatric Lobby proclaims in relation to ME.  It's all a made-up fantasy, based on nothing more than "because I say so", a fairy story that has wreaked unimaginable havoc and suffering. Regarding the NICE Guideline, there will be no change until the psychiatric lobby are completely expelled from their profoundly destructive involvement in Myalgic Encephalomyelitis.

Fundamentally Flawed

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Earlier this year, the 25% Severe ME Group and Stonebird wrote a joint letter to Professor Mark Baker at NICE, its purpose was:
(1) To express concern that the current Clinical Guideline (CG53) is unsafe and requires a health warning. (2) To ensure that any replacement guideline facilitates an approach to care delivery, management and treatment of M.E. patients that is relevant and safe. We also asked for an assurance that the questions for guideline development and the conduct of the guideline development process will ensure that M.E. is not confused with any other disorder. NICE replied on May 4th : 1. In regard to a “Health Warning” : They stated that they are aware that the "existing recommendations are a matter of concern to some patients and groups", that over the next 3 months they will be recruiting the Guideline Development Committee (GDC) who will be asked to "advise on the representations we have received about the existing guidance on treatments." 2. …

TOUCH, FEEL,INTIMACY, ALL LOST

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May 12th International ME Awareness Day
I feel heartbroken. I am trapped,alone, separate, numb, blank, floating in a dark space, with no connection to past or future, no memory, no words, just pain and distress, at the sheer physical discomfort. I feel lost from my past life, lost even from my life within severe ME -the paralysis overwhelming me and shutting me down, year in, year out, so that even my moments of beauty, joy and comfort are dismembered and torn away too. I just feel separate and blank, lost myself too, my joy, my feeling of goodness or kindness, all gone in a gyre of pain that touches every level of my being, and emptied muscles that should have walked and swum and danced and played and been used for so many years, yet instead are lost to stillness and impossibility. Touch, feel, intimacy all lost. My eyes won’t even work to look at you and see you. They stare, they do not register what they see,they go dark, they make words dance about, they swell, they hurt. They can…

BUILD A MATRIX OF TRUTH

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You are negated as soon as you step into the world of ME.

Suddenly you find that people don't believe you are ill, that people will deny you have a neurological disease, suddenly you won't receive the same respect you used to have.

Friends and family and professionals will not understand your illness, will actually negate your experience, will blame you for your illness.

You will find little or no help from the medical profession.

You will find your symptoms are not tested or treated.

You will be left struggling to find ways to cope and find a voice to drown out the negation of the world.

Even so, there is a sense, as never before, that the tide is finally turning. Voices From The Shadows, the #Missing Millions Campaign, Unrest, the widespread media coverage that Clare Norton and Sophie Cooklyn are bravely generating, these films, that people's movement, those individual voices bravely speaking out, all affirm how powerful the truth of ME is, once it's heard.

Up again…

Walking Lightly : Understanding the Moment Approach, part 2

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Stonebird Understanding the Moment Approach, part 2 YOU NEED TO LEARN TO WALK LIGHTLY AND QUIETLY IN THE PRESENCE OF SOMEONE WITH SEVERE/VERY SEVERE ME.
Helping someone with Severe ME will probably throw up challenges to you. You may become aware of certain aspects of your personality that were not so evident till you were in a caring situation. Caring can be exhausting. It can also test your skill, knowledge and patience. People with Severe ME may have previously had bad experiences : ● They may have been disbelieved
● They may have had their symptoms denied.
● They may have been neglected.
● They may still be adjusting to being extremely severely ill. The symptoms of ME are hard to understand, it is crucial to know how imperative it is for the person to be believed, accepted, respected and to be appropriately supported ; TO BE SEEN AS A PERSON WITHIN THE CONTEXT OF SEVERE ILLNESS AND DISABILITY. You may long to help them but there are no easy solutions or quick fixes. Be wary of anybod…

MEETING NEED TENDERLY

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Understanding the Moment Approach Linda and Greg Crowhurst My wife, Linda, is unimaginably ill; I mean that. After all these years I just cannot imagine the agony she is in, when a thing like moving my thumb, or moving, speaking without thinking, is enough to utterly destroy her. The Moment Approach is not just some theory to me. Worked out over twenty five years of caring, it is a framework that I hold onto every day, literally like a drowning man - especially, when things are beyond tough. Without it I might despair. I tell you, brothers and sisters, by now the Moment Approach is deeply ingrained into my very soul; this is NOT head stuff! Consciously reminding myself of it, I find I am able to find a way through the most complicated and demanding situations, incredibly, in a gentle, kind, aware, loving, focused way. That may not sound that much on paper, but an approach like this, rooted in deep, life-bringing values, is profoundly healing, uplifting and liberating! So yes, the Momen…

SOPHIE COOKLYN : SEVERE TO VERY SEVERE M.E. IS NOT ‘JUST’ M.E. AND IT MUST BE TREATED DIFFERENTLY!

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Stonebird :  
A stunning overview not just of Severe ME but also of the toxic politics, the disbelief, the neglect and isolation that surrounds the disease and has been destroying lives for decades. Incredibly gripping, this article tell it, just like it is. That is exactly what we need! Written in the most powerful down-to-earth accessible way, Sophie's article has the potential to reach out to many; surely anyone, after reading her extraordinary account, would be much better educated about Myalgic Encephalomyelitis - and be deeply moved to take action! I am so proud to publish Sophie's brilliant article on Stonebird.
http://stonebird.co.uk/sophie/index.htm