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A review of Unrest by Clare Norton

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Stonebird is immensely proud and grateful to publish Clare Norton's insightful review of Unrest. Her beautiful daughter, Merryn, died age 21, just this year. There is no doubt, Unrest is making an impact in the UK, attracting desperately needed media representation for ME, both on TV and in mainstream newspapers. The film is a fantastic achievement, it is extremely good news to know that Unrest was screened in the House of Commons and got such a good reception from MP’s. However, there are also concerns. Though it is helpful to make the film more widely available, the cost, £12.99 on iTunes, is considerable for people on very low income. I cannot travel to a screening for my wife is far too ill and cannot be left. The experiences of the most severely ill , I understand, are not well represented. Please see Clare Norton’s review. I am extremely concerned that some quotes in the daily tabloids raise the possibility of huge misunderstanding. The final sentence of the Times article, …

VERY SEVERE ME IS LIKE

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Utter and Absolute Chaos. Falling endlessly off a cliff into nothing. Being assaulted physically inside and outside in multiple ways all at the same time with no relief or escape. Having the blankest emptiest space in your head where everything beautiful, colourful, creative, every image, every comprehension , every hope, dream, expectation and every
possibility is extinguished, except for the dark blank swirling pressure and piercing pain that tortures you. Having a knife twisted into the centre of your head whilst at the same time clashing pots and pans as loud as possible in your ears so that it jangles round your head for hours and hours and hours after every single noise has gone away, whilst having a massive heavy, hammer repeatedly hit against your head continuously so that you cannot think and you cannot escape and you cannot stop it and you cannot bear it but you have to endure it, with no alleviation or protection from it and no prediction of when it will increase and no kn…

Introducing "Living in the Heart of Love"

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At last, after months of work, revision the new book is ready !  I am delighted to announce the publication of “Living in the Heart of Love“, a book for those that suffer. For more information, please see the  brochure here. This is the book  webpage. Here is an overview:



 This is a reading from the book :



And here is a short video explaining the background to the book :

A Reply from NICE

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I recently received a reply to my letter to NICE. It is good that they acknowledge " the strength of feeling in the patient community". http://carersfight.blogspot.co.uk/…/nice-reply-to-sir-andre… Dear Mr Crowhurst, Thank you for your follow up email of the 22 September, your letter has been passed to the corporate communications team to respond. NICE will access all the evidence that falls within the new scope however, I cannot confirm or deny whether the JCPMH report will be included as the new scope hasn’t been developed as yet. We will follow our usual, published process to search for and assess evidence to answer the questions which will be set out in the scope for the guideline. The draft of the suspected neurological conditions guideline was released for consultation in August this year. Consultation on this guideline has now closed but the committee will consider and respond to each comment submitted by stakeholders. The guideline will also be revised before publicati…

A world of medical denial

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YOU ARE EXTREMELY SERIOUSLY ILL. Yet you live in a world of medical denial. Medicine therefore makes us worse. Sadly we are safer at home, away from all who would do us harm, whether unintentionally or through deliberate ignorance and wrong thought or arrogance. We are at risk every day that practitioners are allowed to
choose whether they believe that ME is a neurological
disease or a mental health condition. We are at risk all the time that people do not understand that
any intervention no matter how seemingly minor, can and will
make us desperately more ill, if wrong. We are at risk all the time that other people do not understand
that their presence alone can do harm if they do not take into
account the complex hypersensitivities that people with Severe ME experience. Whoever would believe that speaking in an ordinary voice or
asking a single question or touching a person's arm or turning the radio on or wearing your favourite perfume or perhaps giving someone a sandwich made with th…

A Crime Against Humanity

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YOU HAVE TO BE STRONG. You have to find love. You have to be more than you ever thought you could be. You have to be in the most dire circumstances and still come through by your will alone and the will and love of any who genuinely care for you. When this level of torment hits you every moment of every day it is beyond coping with. Some don't make it. Some die. Some choose to end their suffering. And some keep going desperately hoping, wanting, expecting, demanding that the future is better than the past. You draw on an invisible wellspring of determination to live and a thirst and hunger for justice and truth, for healing and hope and to see those who have deliberately covered over the truth of this illness held to account. For this level of torment is a crime against humanity.

12 REASONS WHY YOU SHOULD CHOOSE TO LIVE, WITH SEVERE ME:

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You are a beautiful person.Your life is precious.Giving in and choosing death means the culture of deathand denial wins.▪There is always hope of a better moment.There is always hope of a biomedical breakthrough.▪It is not your fault that you are ill and you should not blame and punish yourself because you are struggling to cope.▪Suicide and euthanasia cause massive harm in its impact on other people emotionally, mentally and can lead to more suicide and death.▪There is always something you can change however smallthat might make a difference.▪The illness is huge but you are bigger than it.▪You can rethink the way you are living and make differentpositive choices to accommodate your difficult reality,even small things can make a big difference.▪Feeling you want to kill yourself is not the same as actuallywanting to do it.▪You can be kinder to yourself and validate how amazingyou are to be living in such difficult circumstances, not hurt yourself more.
This is dedicated with LOVE to all…