Showing posts from February, 2017


Today I am screaming internally with the weakness, shifting, crushing pain, the throbbing numbness, t orture from the simplest noise or movement. Everything feels broken inside me. No path to communicate, to verbalise, to express. No path to comprehension, understanding. No path to memory or information. No way to explain or describe the agonised reality I live in. Every sound hits me. Every noise hurts me. Every unexpected invasion of my space paralyses me. My muscles are dead to feeling but alive to pain. Contact so exquisitely unbearable it is impossible to convey the sensation it engenders or the pain level. This forces me into intolerable, invisible isolation. For even if I am in the same room as you I am not experiencing you or the environment in the same way. Even the sound of your breathing can be an irritation to me because it is assaulting my senses. The I that is me, is trapped deep within me, suppressed and compressed into smaller and darker spaces as eye


The potential for deprivation of liberty under the Mental Capacity Act is worrying, especially for people with Severe ME. We are all aware of how Sophia Mirza was sectioned under the Mental Health Act and the terrible consequences. Our hearts go out to Karina Hansen in Denmark, for all she has endured. The Edith Ellen Foundation are organizing a Conference : MENTAL CAPACITY ACT 2005, A DECADE ON , for families in Norfolk.

Channelopathy : an important issue for those with Myalgic Encephalomyelitis.

  “ Stop what you are doing right now and be prepared to lose all possibility, all plans, all intention, all the things you take for granted. ” Linda Crowhurst (2016) This is what happens each time paralysis repeatedly strikes. We are extremely concerned that paralysis is not treated as if it is part of ME today. Paralysis, a recognised part of Myalgic Encephalomyelitis is generally ignored, down played, disrespected or treated as not real. Who is treating or researching or taking paralysis seriously as a fundamental symptom especially in Severe ME?  We know of no one to turn to who can help and advise and support the detailed investigation needed for this particularly devastating symptom.Living tortured, isolated, neglected lives of silent agony on the furthest edges of existence, people with a Severe ME diagnosis are some of the most tormented and isolated, neglected people in the UK.   Their illness is a trauma and a tragedy.  The clinical expertise they need to treat

Be a trouble maker

  Greg Crowhurst Aug 13  2007   “ You can’t go after a health care system under the control of the insurance companies and pharmaceutical corporations. That system is immune ..” warns Noam Chomsky in his latest book, (Interventions, Hamish Hamilton 2007) , yet a radical US-style corporate-led health care system is exactly what New Labour are bringing about in the UK , shadily and with little public consultation. The consequences for people with ME are dire indeed. Here are just a few examples of how big corporations are taking over the NHS : (cf. Alex Nunns 2006 The financial system underpinning the new market model of healthcare is Payment by Results (PbR), no other country in the world is moving faster than the UK to implement it. In April 2006 PbR was rolled out to cover over 80% of hospital activity, placing them in competition with each other. It is an open door to private companies. One of the purpos