Showing posts from January, 2019


Stonebird, announcing a new publication: MY INVISIBLE WORLD,WHAT YOU SHOULD HAVE AND WHAT YOU DON'T GET "How do you describe the indescribable: 26 years of being disappeared from your own life. 26 years of being disappeared from your own self in severe to extreme, unremitting pain. " This harrowing account of systemic medical neglect, dismissal, profound suffering ,devastating deterioration, is a graphic description a of hidden reality, that very few know or would even consider possible in the 21st century. Surely anyone reading this would weep.


If I make an unexpected noise or movement, no matter how slight, or cause any kind of unexpected shock, the impact upon my wife, who has Very Severe ME is way beyond catastrophic. In the diagram below we have tried to show the possible triggers : just about anything! It is the greatest possible pain to see my wife's whole day totally destroyed by something apparently small and insignificant that I have done; the hour upon hour - if not days of intense naked suffering that follow. YOU HAVE TO ULTRA AWARE AT ALL TIMES, as carer! As the diagram shows, it is not just my actions. Sleep, rest, sitting are also common triggers. Yet, paralysis, which was frequently mentioned by the early authors, especially Ramsay, is rarely if ever mentioned today by clinicians. WE DO NOT UNDERSTAND WHY; our own studies have shown how common paralysis is, especially in Severe ME. On Stonebird the recognition of paralysis in ME is our defining mission.

Make My Arms A Channel of Love

"When I see the pain in your eyes..." The depth of physical suffering in Very Severe ME is incomprehensible to anyone who does not have direct personal experience. This is a film about how I have learned a great deal, as a carer, about the power of love to carry us through all the terrible pain, the isolation and endless agony; 26 years so far. Words, Music and Art (c) Greg Crowhurst 2019

You cannot even define what ME is !

We have had an horrific week. It fills me with rage, daily witnessing my wife's never-ending screamingly awful agony, to know that STILL, after so many years, nobody can definitely say what ME is and who has got it. It is absolutely horrific that is no universally accepted clinical definition of the disease, one that takes into account the full symptom experience across the ME spectrum,   including paralysis. What hope is there of helping the most severely affected, all the time you cannot even define what ME is!   We are in desperate need of a concise definition, one that separates ME from generalised fatigue conditions, misinterpretation and mistreatment.


For all all. For everyone with ME. For the ones in agony. For the ones who cannot cope another moment. For the ones terribly close to giving-up. For the ones who have no voice. For the ones who have no one to understand or help them. For the ones who have been suffering for decades without a single second of relief. For the ones who are badly deteriorating. For the ones desperate for medical help, that is just not there. For the ones oppressed by lies and misinformation about their disease. For the ones that are dying. For the ones trying to make a stand. For the ones speaking up. For the ones in need of courage and affirmation. Never let it go out. Let your light shine brightly and powerfully. Never hide it away. Dig deep. Shine your mighty light. YOU MAKE ALL THE DIFFERENCE.