Stonebird

PLEASE CIRCULATE AND PUT IN WEBS. THANK YOU.   Spain, August 12, 2011 A judge orders a 12-year old girl with Chronic Fatigue Syndrome /Myalgic  Encephalomyelitis (CFS/ME) and Multiple Chemical Sensitivities (MCS) to be locked up in a psyquiatric ward of a hospital and forbids her mother to see her.  We are calling on everyone to support this family and to help us with the legal costs. THE FACTS Last Saturday August 5, 2011, two plain-clothes policemen went to the home of V.R., a 46 year-old woman who has severe CFS/ME, MCS and Fibromyalgia, and took her 12 year-old daughter (who also has CFS/ME and MCS) with a judge’s order which stated that the girl had to be hospitalized in the psychiatric ward of the local hospital in Central Spain and to keep the mother from seeing her. THE BACKGROUND The mother, V.R., who is very ill herself, has been fighting for years the local Social Services. She had been denounced by the School Board for her daughter missi...

I doubt the man down the road would be any wiser after watching this film , about what ME actually  is and much more  than that, he would still not have a clue what my Linda goes through, apart perhaps from brain fog ,  tiredness, and some flu-like symptoms. Talking about being ill is not nearly as powerful as showing the actual illness; watching Rik Carlson's film yesterday was certainly a moving experience - for we know what's it like to live with ME, we have a pretty good  idea what the brave folk who spoke out so well and so vividly are going through ,but sadly Invisible is the perfect tile for the film.  God bless The Vermount CFIDS Association, such  a determined, warm group , for making this film and for reaching out to us all. It is just too bad  that it  left me shaking my head at the end  and murmuring "oh no !" Please,please - what was all that last scene  in the woods all about  ? Maybe I am too dense, but the messag...

Who would have thought web design would have brought me to this place ? Though my research into JavaScript of all things,  I have become aware of   a  "Slow Movement", born out of a need for connection,  which  is    taking root around the world  - see for example :  http://www.slowmovement.com/ .  I had no idea ! It strikes  me : if  there is anything I have learned from the last 18 years of being with Linda,where any action can have the most devastating consequences,  it is about the value of "slow" caring : Slow caring is where you  come from a place  where you are incredibly centered  in yourself,  no matter what is happening on the outside. It is like taking a breath and in the breath allowing your thought to perceive what is going on, before taking action. Your slow action is empowering,  pro-active, not reactive. Your aim in slow caring is to enable a more posit...

This is a picture of Severe ME. This is a picture of unendurable   head-pain, yet still trying to find the peace within it to cope. This is a picture of physical illness. This is a picture of numb, cold   hands. This is a picture of someone, who can go nowhere, do nothing, bear no noise or light, stand no touch, think no thoughts. This is a picture of endurance, of pain upon pain, upon pain, going backwards 17 years going forward to infinity, throbbing in agony, pulsing with persecution. This is a picture of isolation, of separation, of denial. This is a picture of someone who receives no medical treatment. This is a picture of someone for whom there is no hope of a cure; all the time millions of pounds are wasted on psychiatry to the neglect of biomedical truth. This is a picture of someone who is misrepresented, misinterpreted, mistreated. This is a picture of the hidden suffering of ME. This is not a picture of someone with a mental health issue.  This is a...

Caring : it will easily  break you,  or it will take you places and teach you things  you never thought possible. So long as you stay defiant, that is. You've got to keep fighting, especially in the face of Very Severe ME. I write this with a tear in my eye. Yesterday I received news that I have passed my WebMaestro Advanced Web Design course with the grade of distinction; how did I ever make sense of that JavaScript ?? But hey I did. I did  it to keep myself going and growing. Now  I   have more more equipment to fight with, tools I can use to strip bare the misinformation that in the words of Paul Simon, "follows us like a plague". I have  the  ability  and skill to build  practical applications like our  ME Symptom Tool and cutting edge professional -standard , ME-friendly websites;  my diploma proves it. Next I am studying Flash and Graphic Design. That's some achievement and I am proud of it :  in t...

Stonebird - this is the beginning, not the end : a response to the new ICC Criteria Greg Crowhurst 24 th July 2011 ( All captions in the film above, are taken from the ICC.) The health needs of  people who have ME are  beyond neglect. The new ICC Criteria are  the beginning, not the end point , of much needed change. Until we have an adequate classification system we cannot begin to safely and adequately provide a proper biomedical health service for people with neurological myalgic encephalomyelitis. By creating this explicit  criteria, a clear focus has been been established  around which a matrix of truth now needs to coalesce so that new tests, treatments and approaches , for people with ME, can be lobbied for and brought about. For many years, the  Wessely School , which  has immense influence over Government policy,  has been aggressively promoting a conceptualization of Myalgic Encephalomyelitis as a mental illness , a concept...

New Myalgic Encephalomyelitis International Consensus Criteria What  a great day ..here are six knock -out  recommendations, there so many,  from the just published    Consensus Criteria - with this under our arm, we are ready to fight as never before. 1.The six-month waiting period before diagnosis is no longer required. No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for six months.     2.Using “fatigue” as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has “chronic fatigue” attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS.   3.“Malaise – a vague feeling of discomfort or fatigue is an inaccurate and inadequate word for the pathological low-threshold fatigability and post-exertional symptom flare.   . 4.  Symptom severity impact ...