Showing posts from July, 2017

Hoping for a post-PACE world

Pity Franz Kafka, who wrote to his love, in 1920 that “I’m mentally ill, the disease of the lungs is nothing but an overflowing of my mental disease.” (Sontag 1978) He actually had Tuberculosis. How awful it must be to have lived with the burden that you have been told that are severely sick because you think you are. (Sontag 1978) Pity Napoleon, Ulysses S. Grant, Robert A. Taft and Hubert Humphrey, whose cancer “was diagnosed as the reaction to political defeat and the curtailing of their ambitions. How awful it must be to be seen as a “cancer personality”; as a “loser”. These days, it is incomprehensible that TB and Cancer were once seen as a mental illness! But how can it be that the WHO classified, yet poorly understood physical disease, Myalgic Encephalomyelitis, a disease that places a greater physical burden on patients than schizophrenia, cancer, stroke, multiple sclerosis and Type I diabetes, (Johnson 2015) is widely regarded as mental illness by medicine, when there i

A letter to Sir Andrew Dillon , Chief Executive, NICE

Stonebird 27 th July 2017 Sir Andrew Dillon, Chief Executive, NICE Dear Andrew Dillon, Re : Myalgic Encephalomyelitis I have cared full time, for 25 years, for my wife who has a diagnosis of Very Severe ME, my Nursing Standard article " Supporting people with severe myalgic encephalomyelitis " is referenced by NICE in the original 2007 guidelines. In 2015 I was third place finalist, BJN, Nurse of the Year, for which I received an award specifically for my work in raising awareness of and advocating for people with Severe ME. I was Secretary of the 25% Severe ME Group charity for many years and represented the Group at the Gibson Parliamentary Inquiry. In February the Joint Commissioning Panel for Mental Health document published Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning , which misinformed Commissioners that Myalgic Encephalomyelitis is a Somatoform, mental health di

NICE Guideline CG53 : a Human Rights Issue for people with ME ?

Stonebird “Loyalty to petrified opinion never yet broke a chain or freed a human soul. “ Mark Twain NICE's recent decision not to update its hopelessly flawed guideline, CG53, reeks of an institutional psychiatric bias that has blocked medical research and treatment for people with ME for almost half a century, has led to patients taking their own lives out of despair and hopelessness, has led to the breaking up of families, the sectioning in locked mental health wards of the most  profoundly ill and an all pervasive, a deep set culture of suspicion and denial, that makes any encounter with services hazardous, immensely stressful and dangerous and the severely affected being left for decades to cope, often with no appropriate service whatsoever. People have no hope, the suffering is indescribable, too many people die without the medical knowledge to save  them, other people take their own lives, not because they are mentally ill, but because there is n


I try not to let the shambolic mess that passes for “ME” advocacy these days get to me too much; through each, long heart-breaking moment of her agony and paralysis, my focus has to firmly be with Linda. Our days are brutal; here on the extreme edge, what you search for, passionately, is truth. Anything else just gets in the way, is potentially fatal. So, it is gutting knowing that 10 000 people have signed an MEA petition for “CFS/ME”, never did I think I would see the day the so-called ME community would cave in and use that most damaging, most insidiously evil, most wicked of labels. We haven’t had much to hold onto down the years , but at least we used to insist upon the correct use of Myalgic Encephalomyelitis, by God, with no mention of “CFS”. “ME/CFS” was bad enough, but it was physically repulsive to use the language of psychiatry that has caused so many deaths. For as people with ME should know by now, CFS/ME is not a single disease, it is a Chronic fatigue- foc

Stakeholders : speak up !!

Stonebird, July 2017 When you look at their track record, is it any surprise that NICE’s “Topic Experts” have decided “ to not update the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) at this time. ” , given that : The NICE Guideline was based upon a handful of low quality Randomised Controlled Trials, that were methodologically flawed. The NICE Guideline failed to grasp the full nature of neurological ME and the implications for management, and also failed to provide adequate guidance for diagnosis, specifically not separating ME from CFS and CF. The NICE Guideline failed to include experts from all the relevant professional groups on the Guideline Development Group . The NICE Guideline did not study the aetiology and pathogenesis of ME, this meant that thousands of papers could not be discussed as part of the process. The NICE Guideline ignored the international evidence that ME is a biomedical, not psych