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Notes for NICE Stakeholders Part 2

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Stonebird
Notes For NICE Stakeholders, Part Two

DO NOT USE THE TERM "ME/CFS".

People with ME should be able to feel safe; they certainly are not safe right now.

Services, in general :

● do not represent them
● do not respect the experience of genuine Severe ME
● do not understand the severity of illness
● call ME a fatigue illness
● downplay the symptoms of neurological ME so that it will appear to fit into a fatigue service or fatigue regime.

ME services must be about ME. Nothing else.

Do not use the term “ME/CFS”.

Do not confuse illnesses.

Do not confuse treatments for ME with psychosocial misrepresentation.

People with ME need new medical tests and treatments . Lives and health are at stake.

Because of the labels “CFS” or “CFS/ME” or “ME/CFS” people with Myalgic Encephalomyelitis are easily open to being :

● Abused
● Misrepresented
● Mistreated

This is particularly so for the most Severely Affected.

Much of the current literature on “CFS/ME”, an unfortunate meaningless um…

Notes for NICE Stakeholders Part 1

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Stonebird 
Notes for Stake holder Meeting Jan 16 2018 TEN CRUCIAL ISSUES THAT NICE MUST ADDRESS : 1.NICE must affirm that they accept ME is not caused by wrong thought, wrong belief or is an emotional disorder. 2.NICE must produce an appropriate, biomedical not psychosocial Guideline for Myalgic Encephalomyelitis . 3.NICE must abandon the psychosocial paradigm and the CBT/GET and graded activity management treatment pathways. 4.NICE must ensure that any vested interests of members, for example, links with the Medical Insurance Industry, are fully declared. 5.NICE must ensure that the Guideline Development Committee comprises biomedical clinical expertise. 6.NICE must consider the health benefits, side effects and risks of any proposed interventions , when formulating recommendations; last time they were excluded from consideration and / or ignored. 7.NICE must ensure that the Systematic Review of Evidence will not exclude biomedical publications this time; over 7000 published papers, …

CARING : IT WILL MAKE OR BREAK YOU

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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 every wrong mo…

New Book : STRAIGHT-JACKETED BY EMPTY AIR

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“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 Duyn, Clare Norton, Naomi Whitting…

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 :