STONEBIRD Just to let people know that I have updated Stonebird, with a lot more information on Caring issues. We are no longer active advocates for ME, however I have linked to many of our documents, which may be of use. There is also a link to the Blog, which is updated regularly on general issues. STONEBIRD.CO.UK Stonebird: The Lived Experience of Severe Myalgic Encephalomyelitis (ME) The lived experience of severe myalgic encephalomyelitis. Stonebird : the lived experience of Severe Myalgic Encephalomyelitis (ME) www.stonebird.co.uk ..read more

 CARING FOR ME, A SHORT POCKET BOOK COURSE I am sorry to hear that the link to "Caring For ME" on Stonebird hasn't been working. I have just sorted that out! If you don't know about the book, well, it is the Course and the Information I would have liked to have available to me when I was first faced with caring for someone diagnosed with Severe Myalgic Encephalomyelitis. For little did I know that i would need to develop an extra special level of awareness, one that is not obvious, easily won or even known about, one that requires time, skill, commitment, determination, empathy and abov ..read more

  CARING FOR ME, A SHORT POCKET BOOK COURSE I am sorry to hear that the link to "Caring For ME" on Stonebird hasn't been working. I have just sorted that out! If you don't know about the book, well, it is the Course and the Information I would have liked to have available to me when I was first faced with caring for someone diagnosed with Severe Myalgic Encephalomyelitis. For little did I know that i would need to develop an extra special level of awareness, one that is not obvious, easily won or even known about, one that requires time, skill, commitment, determination, empathy and ab ..read more

Well done Greg for this moving video, music composed and performed by him, also wonderful expressive drawings that convey emotion so powerfully! https://www.youtube.com/watch?v=i-HoS_A7wps A huge achievement to be shortlisted in an international creative art competition out of so many.people.: https://alpinefellowship.com/visual-art-prize “There are no words to describe caring for someone in agony for more than thirty years. This video was shortlisted out of over 1800 entries for the 2024 Alpine International Arts Prize.” There are no words, the only answer is love. Stonebird : the lived ex ..read more

  A beautiful love song, written by Greg, illustrated very movingly by this wonderful video. https://www.youtube.com/watch?v=56jFWXNA8iU&feature=youtu.be Love has always sustained us through the most difficult of challenges and desolate experiences. Stonebird : the lived experience of Severe Myalgic Encephalomyelitis (ME) www.stonebird.co.uk ..read more

HOW TO BE ASSERTIVE IN ARTICULATING YOUR NEEDS. Linda faces major medical challenges this year, it is incredibly difficult working out how to convey her complex issues and needs to professionals so that they comprehend what she needs to keep her safe. It is so important that we do this, for the terrifying consequences, if they get anything, I stress “anything at all”, wrong are potentially life threatening or will trigger unimaginable suffering and deterioration.. We have to find some way to articulate what, let’s face it, is beyond incomprehensible to most people. I know we have done i ..read more

Here is a new song. It’s up best music with very powerful moving video about living in broken spaces. Words and music by Greg. https://www.youtube.com/watch?v=X4hBMpbvDdg&feature=youtu.be Stonebird : the lived experience of Severe Myalgic Encephalomyelitis (ME) www.stonebird.co.uk ..read more

  YOU CAN It strikes me how there is no word to describe the many, like my wife, who have been ill and disabled for decades, 20, 30 years and more. What word could possibly expresses the death and breath of their suffering, their catastrophic losses, the appalling devastation of their life? A term like the “long term sick” is a hopelessly inadequate representation of the dire situation they are in. Add to that the extra burden many are forced to endure of being saddled for years with a vague diagnosis that has no boundary to safely define it, nor accurate physiological explanation o ..read more

We are deeply moved to see this video of Channel 4 news interviewing Merryn Croft’s Mum about the true reality of severe ME. https://www.youtube.com/watch?app=desktop&v=pobf0RPlJuw&fbclid=IwAR1RsCDMhiCK3ephcQvVIilyXqC11bDtKPL04JyCYhjB_bZAV5VU2kihrmg We are reminded how important it is to get accurate information out into the world about this devastating illness that destroys lives. Here is a review and links to Gregs free booklet on the shocking history of ME and the psychiatric misdirection of a physical disease. https://www.positivehealth.com/review/strait-jacketed-by-empty-air ..read more

 WHAT IT TAKES This getting older…. I could barely walk after cycling yesterday, my right leg seemed to be in permanent cramp all day. It made for an uncomfortable night. However it’s okay, I think so anyway, this morning. Thank God. For the impact upon us, me not able to easily do what I normally do, was quite devastating. We tread a very fine line here. Little do people know what it takes. Sometimes I watch those videos that urban climbers post on YouTube of themselves scaling up the side of skyscrapers, hanging only by their fingers and toes, hundreds of feet high, on flimsy looking ..read more