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Barriers to Connection

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  BARRIERS TO PHYSICAL HELP There are many barriers to getting physical help, when you have Severe or Very Severe ME. What SHOCKS us is how little the issues below are recognised, understood or thought through by Professionals and Services. This list is from my new book, “Severe ME More Notes for Carers” : How can you wear comfortable clothes that you feel good in, if the material on your skin irritates, hurts, feels as if it is you crushing you? How can you protect your feet or find suitable footwear when any pressure on your feet is agony? How can you keep warm in bed if the lightest sheet over you hurts you? How can you cover your eyes to protect yourself from light, if you cannot tolerate sunglasses on your nose or eye masks on your face? How can you protect against torturing sound, if you cannot put earplugs in your ears, due to the pain of pressure in your ears or wear ear defenders on your ears or cope with the pressure on your head, due to hyperesthesia? How can you get back or

Severe ME More Notes for Carers now available as a paperback on Amazon

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 It is my joy to announce that the new book: Severe ME More Notes for Carers is now available from Amazon as both a Kindle ebook and in paperback. For more information about the book you can see the webpage and watch the videos. https://stonebird.co.uk/morenotes/index.html?fbclid=IwAR1Jmdus_w3XLx10-RAEeYspxMYdOxrPKKWljdqGLxkPlMfX04J7ff3DeEY To purchase on Amazon: Paperback:    https://www.amazon.co.uk/More-Notes-Carers-Greg-Crowhurst/dp/1716384532/ref=sr_1_1?crid=3I8ZGLUUZJLGB&dchild=1&keywords=greg+crowhurst&qid=1611499744&sprefix=Greg+cr%2Caps%2C186&sr=8-1 Kindle:  https://www.amazon.co.uk/Severe-ME-More-Notes-carers-ebook/dp/B08QW7932V/ref=sr_1_4?crid=3I8ZGLUUZJLGB&dchild=1&keywords=greg+crowhurst&qid=1611499744&sprefix=Greg+cr%2Caps%2C186&sr=8-4 To purchase the paperback from Lulu:   https://www.lulu.com/en/gb/shop/greg-crowhurst/more-notes-for-carers/paperback/product-m6qv7n.html?page=1&pageSize=4 Don’t forget to look out for any discoun

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