Stonebird

I was reflecting recently on what makes a good carer, it struck me that it comes down to a willingness to listen! The person will tell you all you need to know, if you have ears to hear- sadly many times I have not fully heard my wife, Linda, not read the signs properly, misinterpreted the situation, always with unfortunate and sometimes painful consequences. By profession, I trained as a Registered Nurse, yet I recorded, soon after my wife became ill with Severe ME : “ The fact is I find myself in a situation where my use of a Nursing Process model has served, to my dismay and horror, to highlight how much my own thinking and practice has been locked into a set way of operating. Being a nurse, caring for my wife in our home, means I find myself in a situation, more complex than a professional work setting, where the roles and boundaries are much more explicit. ” We exist on a delicate, difficult knife-edge here, of treacherous life-destroying, ravenous suffering, where ev...

“STRAIGHT-JACKETED BY EMPTY AIR: Psychiatry’s long and shameful involvement in Myalgic Encephalomyelitis” ....is available to download as a FREE eBook. It is a critical time for people with ME, it is important to work with NICE to get a biomedical healthcare pathway established in the UK. To achieve that, you really need to understand the issues, especially the history. This book is offered in love, as a contribution to the ME community, to teach, to inform and, as in all my books, to inspire. Here is how it begins : " If I was to focus all my hurt, all my tears, all my despair, all the love poured out, over 25 years of gross medical neglect, onto these words: PSYCHIATRY OUT OF ME, NOW !! ..they would be written a million miles high. " Many, many thanks for all the support and enthusiasm for this book, it spurred me on! Special thanks to Rachel Higginson, Susanna Agardy, Geoffrey Keith Brown, Sally K Burch, Colleen Steckel, Nancy Blake, Corina Duy...

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 M P’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...

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 increas...

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 :  

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 bef...

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 wo uld 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...