Stonebird

Greg Crowhurst 8th March 2008 (Updated January 2017) When you look closely at what the psychiatric lobby are actually recommending , the tactics they are using and the practices they are advocating, it becomes extremely clear that they do not benefit the severe ME sufferer. The issues though are not always that obvious or easy to grasp ; not given the physical isolation, the severe illness, the brain fog and the other profound levels of disability that people are experiencing with WHO neurological Myalgic Encephalomyelitis. This is a simple summary of the inferred messages underpinning the psychiatric paradigm , currently being heavily promoted in the UK: The   recommendations : do not investigate  ME patients . do not provide  special facilities for ME patients  other than psychiatric clinics . do not offer special training to doctors about the disease . do not offer  appropriate medical care for ME patients .  do not offer...

I don't understand why there is so little outrage about the way CFS has taken over ME. Every day pushes my wife deeper and deeper into an agony so profound it is defies any human capacity to cope, yet cope she must. Extraordinarily, she clings onto hope. But we have to be our own Consultant, our own Medical Specialist, for there is no one else and never will be for someone this severely affected, all the time that "ME" is allowed to have such a broad range of meaning. I don't understand, where is the fire, where is the anger, where is the fight for the TRUTH of Myalgic Encephalomyelitis, anymore ? This video is about the struggle and the agony : https://www.youtube.com/watch?v=w27KsESpeEE One of these days We are going to be heard One of these days All that we fought for is going to be heard I heard the Stonebird sing One of these days You're going to win Oh you ain't no has-been One of these days you're going to win One of these da...

Stonebird Greg Crowhurst January 2017 I never thought, not for a nanosecond, that after more than two decades of struggle, there would be such a thing as advocacy groups strongly pushing for CFS to be reclassified as ME.(Jason 2016). There is so much more than a change of name that is at stake here. You cannot change a label that encompasses a heterogeneous group of people all with different illnesses and conditions and make it mean Myalgic Encephalomyelitis; it is not the same thing at all. Thankfully others are taking a much tougher line, arguing that “ myalgic encephalomyelitis should retain a strict definition as a distinct neurological disease that includes measurable abnormal changes in the brain and central nervous system .” (Jason 2016) But who is listening to them? And how much power and say do they have, at the end of the day? It is a travesty that  “ME” has been taken over by CFS and rendered a useless label with variable meaning. The term “ME” helps no...

A tribute to the most ill and to all those who care. https://www.youtube.com/watch?v=YrinmJkqmOQ&feature=youtu.be

Stonebird Greg Crowhurst November 2016 NICE are currently considering whether their guideline CG53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management requires updating. IT MOST CERTAINLY DOES !!! When CG 53,  based upon a handful of low quality Randomised Controlled Trials   ,   that were methodologically flawed,    was published in 2007  almost all the UK ME Charities condemned it as unfit for purpose. This is hardly surprising given that the Guideline Development Group (GDG) excluded from its membership all NHS specialists experienced in treating adult ME patients . As Kevin Short (2012) comments: “ This is shocking by any standards: imagine the media outrage if a NICE guideline on infectious disease excluded all virologists from its production or a guideline on breast-cancer excluded all oncologists? ” The ME community greeted NICE’s guideline with disgust and widespre...

It is striking how much the experience of the severely affected is comprehensively ignored. As an example, in conjunction with the 25% Group we poured heart and soul into doing these two rare regional and national surveys of people with Severe ME, to try to affect change locally for a biomedical service in Norfolk and nationally for the Gibson Inquiry, yet they are never quoted. This publication is an attempt to rectify the situation.  The voices in this document, still unheard , are of immense importance; their experience of ME is infinitely more extreme than the mainstream, many of whom may not have Myalgic Encephalomyelitis in the first place. These surveys reflect an almost total lack of understanding of this marginalised group. It is to the NHS’s shame that people with Severe ME still receive little to no service or support. http://stonebird.co.uk/psurvey.pdf

The disease that used to be known as “ME” is not recognisable under the umbrella terms of ME/CFS or CFS or CFS/ME. "ME" has become a meaningless term; a complete and total disaster for everyone We are sick of the misrepresentation, the misinterpretation, the lack of clinical respect, the focus on fatigue, the compromises, the misdirection, the mistreatment and misinformation that constantly negates the disease and holds out little hope of change, especially for the most severely affected. Clinicians and charities have, we suggest, contributed to the demise of the term ME by focusing upon fatigue and not the more serious Neurological/Cognitive, Autonomic, Neuroendocrine, Immune, Cardiovascular and Gastric manifestations and Enterovirus as the cause of the disease . They have failed to stand up adequately, if at all, against the damning involvement of psychiatry, often colluding with them openly, condoning for example a research collaborative here in the UK that ope...