Stonebird

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...

Today is our wedding anniversary. 23 years of love and 23 years of indescribable physical pain and repeated paralysis and torment, 23 years of speaking up and fighting for appropriate help.  How do we celebrate? We light a candle and give thanks for our love which has grown despite the horrendous circumstances and medical negation experienced down the decades.  We hold on to hope that next year will be better, that the truth will be revealed, that understanding will manifest and justice be found. An anniversary then both of loss and hope. We pray for strength to carry on. We ask for healing. We want answers. May this be the year.

11pm, my wife is slumped in unabbreviated agony, but there is extra pain tonight, her right wrist is  burning up, a fly is tormenting her and everything I do is a profound irritation. The slightest mistake, like scratching my head, plunges her ever deeper into the terrible chasm, that is pulling her, inexorably, ever deeper into the molten centre of the earth. Far below normal life and routine, we are buried deep, both of us. It is beyond reason or comprehension that it has been like this for well over two decades. Looking back I think can distinguish three phases to our journey into suffering. 1. The age of hope and rainbows You look for the meaning within, you seek to transcend the situation, through prayer, meditation, candles, mantras hoping, at least I did, that by seeking and finding a higher path that you will learn what you need to know about making choices, letting go, forgiveness, healing, and putting healthy boundaries in place. Then there will be freedom, i...