Stonebird

Stonebird People with Severe and Very Severe ME are not safe within the current health system; this is not an exhaustive list by any means : 1. It is virtually impossible for the most severely affected to travel to a clinic or a hospital. 2. It is extremely difficult to find a knowledgeable GP or consultant . 3. There is little, if any, choice of biomedical ME consultants. 4. Knowledge of how to approach or communicate with a person with Very Severe ME is minimal. 5. The system expects people to fit into it and is not very accommodating of those who cannot. 6. Hypersensitivity to touch makes physical contact unbearable, dangerous, impossible without harming the person with Severe ME. 7. Hypersensitivity to noise makes it difficult to impossible to bear the sound of the voice of the GP or consultant, let alone all the background noise and any other noise exposure. 8. The impact of noise may cause the person to be damaged and physically harmed for weeks, months, ev...

  Stonebird The entire case for psychiatry’s involvement in Myalgic Encephalomyelitis is the wrong assertion that “ME is a somatoform disorder”, in other words a mental health condition. Here are a couple of useful questions you can use to challenge that blatant falsehood: 1. According to whom? Certainly not according to the WHO, to the IOM, to the Department of Health, to worldwide biomedical clinical research and to over 9000 research papers outlining serious, profound, complex multi-system dysfunction and a sickness level comparable to last-stage AIDS or terminal Cancer. 2. Who says ? Certainly not ME patients and carers, who are universally opposed to front-line psychiatric intervention in their disease and who have suffered terribly either from being forced to undergo CBT and GET, the worse possible "treatment" for ME or from being lied about and denied proper medical care, for decades on end. But who listens to them ? The term “Somatoform Disorder” i...

Greg Crowhurst January 23rd 2018 Whatever you feel about this film, the fact is Unrest has managed to access the mainstream in ways that other previously important documentary films have not managed to achieve and has been short listed for an Oscar. Being available on Netflix makes it much more accessible for the house and bed-bound. Cinema, of course, is impossible here. I approached the film with great interest. One of the difficulties of living and caring full time for someone profoundly hypersensitive and very severely disabled, is the massive isolation, of necessity that you experience. To have an opportunity, then, to see how others experience living in this bizarre world, was extremely valuable; though If you want a specific, pure ME film, you will be disappointed and irritated by the mixing up of the names, ME and CFS. What we see in Unrest is a group of very ill people and in particular Jen Brea and her husband, struggling to come to terms with the devastating a...

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/M...

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 publication...

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...