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ANNOUNCING THE PUBLICATION OF SEVERE ME: MORE NOTES FOR CARERS

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It has been an impossible, agonising struggle, under the most horrendous circumstances, but I so much wanted to produce a detailed, comprehensive Care Guide to Severe and Very Severe ME, especially with NICE in the offing. I am very proud then to announce the publication of my new book "Severe ME: More Notes For Carers" on Kindle and also now in print. For more information, see: https://stonebird.co.uk/morenotes/index.html Hoping it brings insight and understanding to many. The book is dedicated to our dear friend Merryn who died from Very Severe ME. She will always be remembered.. The lives of the most severely affected should never be forgotten.

How Many?

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(This very painful poem by Linda is from my new book;"More Notes For Carers" which is out soon.) How many days, weeks, months, years, has the sun, shining outside my window called to me to come out and play, Yet I have been unable to comply? How many times has the world passed me by, the simplest of things being impossible to achieve? How many years have I lain in bed unable to move, speak or get even the simplest most basic need met? How long have I sat in impossibly twisted painful postures paralysed stiffly, feet glued to the floor too heavy to move? How many, many thoughts have been lost, barred access to, how many words misspoken or phrases cut short or twisted into unrecognisable form, Too many to count, too many to tell, too many to remember? How much pain can one body take, burning, throbbing, itching, screaming, continuously, With no let up, no respite, no remission, no effective treatment? How much harm has been done to me by ordinary things like insignificant nois

Initial Impressions of the Draft Nice Guideline

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Thoughts From a Very Quick Reading On the surface it feels refreshingly different, but there are huge concerns. Without any clear definition of what NICE means by”ME/CFS”,the Guidance can only be generalised energy management, which is exactly what, on quick reading, it seems to be. The Fatigue Centres, far from being dismantled, appear to have been accorded expert status, from an initial read. This is a huge concern. Without defining what Severe and Very Severe ME actually are and not including a full symptom experience, we fear people will still not be understood and will still be at risk. If you do not acknowledge the real symptoms of the most ill, you are never going to get the Guideline right for them. On first reading, the Guideline does not give us much confidence that it has any idea about Very Severe ME or how to approach someone, or what they need or how to provide it. How, for example, can people with Very Severe ME realistically do CBT with the level of Cognitive Dysfunc

Severe ME: CONTEMPLATE PARALYSIS IF YOU CAN

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(An Extract from my forthcoming book   " More Notes For   Carers" ).    STOP WHAT YOU ARE DOING RIGHT THIS MOMENT That means you cannot move any part of you. Your feet are stuck to the ground. Your thighs and your bottom are stuck to the seat, whatever your position was, when it hit you. You cannot change to a more comfortable position, not even an inch. Your toes are immobile, your hands are useless, your fingers too will not move a fraction. You have an itch on your face, another coming to your head. But, you cannot move to scratch them. They are irritating, but impossible to reach. So however itchy or demanding the itches become, you still cannot move to scratch them. Of course you want to. It is a simple enough gesture, quick as a flash in the normal moving world. But no, you cannot move your finger, lift your arm, find your face, move your head, even a degree from where it currently is. None of these movements are possible, all removed from possibility in one bizarre in

DON’T LET US DOWN!

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Sadly this is a list of some of the ways people with Very Severe ME are let down: Families who do not seek to truly understand Very Severe ME, let us down. Friends who walk away, judge, blame or just get tired of people with Severe ME, as being too difficult to connect with, let us down. Neighbours who chose to ignore the needs of people with Severe ME because they are too inconvenient for them to be bothered with, let us down. Charities who support, in any way, the Biopsychosocial interpretation of ME in any form, by collaboration or validation or simply by not standing up against the misinformation and mistreatment of ME, let us down. Clinicians and other practitioners who chose to follow a psychosocial interpretation and agenda that completely denies the reality of the disease let us down. GP’s and other medical professionals who chose not to do home visiting to those unable to go to them, let us down. Anyone who puts their own opinion and pet theory above the truth

Stonebird Review of Dialogues from a Neglected Illness

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With a wealth of moving and harrowing material, this   series of Videos  informs, illuminates and manages to convey something of what the most severe ME patient is going through. As Stonebird provides information and raises issues pertinent to Very Severe ME, that is what this review will focus on. On a practical note there were problems opening the videos on the website, one contributor’s voice was completely missing when played, repeatedly, so that content and important information was missing from the Management of Very Severe ME video; the film also froze repeatedly and would not continue at one point. Some of the other films would not open at all or froze too. That could be very disruptive and off putting, especially to anyone with visual and cognitive disability or with depleted levels of energy. We do not know how widespread this issue is or why, but it did make it hard to watch and review the material. We also found that some of the written material was not displayed

THE STONEBIRD DEFINITION OF SEVERE ME

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Severe ME is a hellish experience that you live and endure without treatment, cure or respect. Severe ME is not knowing how to cope from minute to minute, moment to moment. Severe ME is being tormented by people doing ordinary things. Severe ME is being inhibited by paralysis. Severe ME is being totally ill, all the time. Severe ME is being unable to read. Severe ME is being unable to hold anything. Severe ME is falling over regularly. Severe ME is your mind not working. Severe ME is being unable to speak on the phone. Severe ME is finding that going to bed or remaining in bed makes you feel even more ill. Severe ME is discovering that there is no possibility of rest, ever. Severe ME is being unable to see anybody because they make you more ill, because you are so hypersensitive. Severe ME is not knowing what to eat that won't hurt you. Severe ME is being neglected by the Health Service. Severe ME is having to regularly have to prove you