Showing posts from August, 2013

Compromise is not acceptable

Stonebird statement on the UK CFS/ME Research Collaborative THE PSYCHOBABBLERS STRUCK AGAIN… they announced a new UK CFS/ME research Collaborative…(to) “functional somatic syndromes and prior mood disorders.” THE NATIONAL FORUM, SUMMER 2013, NATIONAL CFIDS FOUNDATION To compromise the truth of ME is to compromise lives.  It is time  to stand up for Myalgic encephalomelitis as a distinct neurological disease. To cooperate with the new collaborative initiative, to attract research funding sounds seductive and appealing to the unaware - however it is to accept the  research of poorly identified cohorts of patients , including those who do not have ME at all, but have been collected together under the insidious umbrella title of CFS. CFS standing for Chronic fatigue syndrome, is a complete misrepresentation of our disease and a denial of many of our most serious and disabling physical symptoms. For too long people have compromised. For too long have we been

I feel so lonely

Here In this moment With these indescribable sensations With this unbearable weakness With this complete inability to do anything I feel so separated from everyone And everything Because none of me is normal None of me works like it should None of the ill me is seen in its fullness Because it is truly invisible Nothing can make this moment right Nothing can help me feel any better than I can bolster in myself Not enough is being done To make this illness go away And not enough is being done To make the psychiatrists go away Where is their shame? Where is their contrition? Nowhere. Where is the harm? Everywhere. Every moment someone is suffering: Tormented, distressed, in agony, helpless, incapacitated By this illness All the time it is allowed to be called CFS All the time it is allowed to be misrepresented As deconditioning and wrong thought All the time there is no coherent biomedical response. That is, basically, A

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un