Stonebird

Those Unsinkable Rubber Ducks : a selection of rapid responses to Santhouse et al, Chronic fatigue syndrome BMJ 2010; 340: c738 Greg Crowhurst Feb26th 2010 (permission to repost) “The advent of every major juncture in man's understanding of himself and his environment, every staging post on the journey of knowledge that we all have the right to call science, was heralded by the sounds of scoffs and guffaws. In the words of the German philosopher Arthur Schopenhauer, 'All truth passes through three stages. First it is ridiculed. Second, it is violently opposed. Third, it is accepted as self-evident.”(p5) This observation from Christopher Brookmyre’s “Attack of the Unsinkable Rubber Ducks”(Abacus 2007) is directed at those who keep on believing in a theory, like the psychosocial theory of ME, despite all the evidence to the contrary. The “unsinkable rubber duck” principle is this : Whenever you think you have sunk them, they just bob back up again, like Santhouse et a...

...this is a drawing Linda made last night, of the pain and torment her body is in. How do I describe the lonliness of this illness the never-ending barrier that separates me from everything absolutely nothing is experienced or received normally no touch feels right no voice is guaranteed to be heard accurately no action is definitely possible in any one moment How can I live with this torment of wrong sensation and misinformation ? Everyday it gets harder

Defeated ? Not this carer. (Response to Alastair M Santhouse, Matthew Hotopf, and Anthony S David Chronic fatigue syndrome BMJ 2010; 340: c738 http://www.bmj.com/cgi/eletters/340/feb11_1/c738) I have spent the last sixteen years caring full time for my wife who has very severe ME. The greatest challenge those of us who seek treatment for their loved ones face, is the ongoing struggle to get ME removed from its association with generalized fatigue states. Far from feeling “defeated”, however, there is a real sense that at last the tide is beginning to turn our way ; that the world is finally waking up to the true horror that is ME. Those of us who have fought so long for biomedical recognition are buoyantly optimistic. This editorial shows how it is the psychiatrists, whose “unproven beliefs and assumptions are presented as fact” (Hooper 2010) who face defeat ; how they have nothing to offer the severely affected , except an increasingly discredited , vapid, ideology, that has ...

"The Stonebird represents the idea that you don't have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters." Linda Crowhurst I am coming to the end of a Web Design Course. As my final Assignment I am working, right now, upon building a website that will do everything it can to be ME friendly - one that takes into account the need for clean, simple layout, gentle colours and crystal clear information. This website will be called : "Stonebird" and I have just renamed this Blog , in preparation. Stonebird will try to convey the lived experience of very severe ME, within a marriage. Like the day before yesterday. As if a curtain had been pulled back, Linda sat before me in her wheelchair and I could see right into the horror of her illness. She is very, very ill. A glimpse like that burns your very soul and there is nothing you c...

Link(s) to full text of BMJ editorial "Chronic fatigue syndrome" (Santhouse et al, 2010) (sub-heading: " Defeatism among clinicians is undermining evidence that it can be treated ") http://tinyurl.com/yb3343w i.e. http://www.meassociation.org. uk/index.php?option=com_ content&view=article&id =1195:in-the-bmj-today-11-feb- 2010-defeatism-is-undermining- evidence-that-ch ronic-fatigue-syndrome-can-be- treated-&catid=30:news&Itemid= 161 A Dangerous Path Linda Crowhurst Some of the points made in the Editorial are indeed correct, for example “the alternative to treatment is no treatment and this can have a disastrous effect on the patient, who may feel the medical profession has given up on them as a hopeless case.” There is indeed currently no effective treatment, no cure and little hope for people who are genuinely suffering from very severe ME, like I have done for the past 16 years. What is missing from this article is...

They say that narrative is everything; it's how well you tell your story that counts today. That must be true for the psychiatric lobby have got where they have , not on the basis of sound science or reasoning, but upon a fantasy that suits the Insurance companies , a fairy tale, a made-up story, a prejudice-fuelled myth that has destroyed so many lives. It's all hot air and illusion. Malcom Hooper's and Margaret William's masterpiece forensically, in excruiciating detail strips bare the psychiatrist's flimsy clothing and exposes them as the lunatic, madly dangerous fanatics that they are; comparable to the Nazis. How incredible that CoCure has published this - for they have explicitly told me, in the past, they do not publish any material linking the psychiatric lobby to the Nazi party. Well, how else can you draw the stark comparisions ? After all it was the Nazis who first coined the term : "the undeserving sick", so beloved by the insane psychia...

I have discovered an anger, a hurt, that lies in silence. Yesterday I went to Church, to fetch the Eucharist for my wife. Yesterday the whole Church prays for the sick. But no mention of my wife. We prayed for our Bishop. And no one really knows me. So , much later, Linda begged God to "please take away the pain, for I cannot bear it". Me holding her, as best I can. Her and me and God. This is the Church.

There is a thick wall of nothing round my head blanking out thought and connection I feel seperate even though you are in the room with me I cannot focus my sight I cannot focus my thought I cannot find words or images in my mind There is a sea of blankness where vivid imagination and vibrant colour should be I cannot truly explain why I feel this way It feels physically tangible this desolate empty wall of invisible horribleness that lies between me and the outside world and you who I love most dearly of all. Linda Crowhurst 09.02.10

20 Facts about being a Carer for someone with severe ME. Greg and Linda Crowhurst 9th Feb 2010 (permission to repost) 1 The relationship between you and the person with severe ME, must be be a priority in your life. You may be caring for decades, as there is currently no treatment, no cure and limited validation. 2 You need to understand the illness , what it is and how it affects the pe= rson. 3 This is going to take time; it will not happen overnight. Tt may take years, even to identify the symptoms and understand their impact. 4 It is going to be painful, as you try and understand the complexity of severe ME and its bizarre nature ; in relation to you as a carer, trying to help the person and the impact it has upon your lives. 5 The person with severe ME is not living in the same experience of the world as you are; this is so hard to understand and to deal with. 6 You are most likely going to have to work this out alone. 7 Until you understand it, can cope with it, know how t...