Journal of IiME Volume 6 Issue 1 (June 2012) On 26th March 2012 the Prime Minister, David Cameron, said on television that the dementia situation in the UK is “a national crisis”. He needs to be aware that there is also a national crisis with the ME/CFS situation in the UK, where sick people are denied the scientific reality of their disease and instead are coerced into inappropriate psychological interventions that have been shown to make 82% of ME/CFS sufferers worse (http://www.investinme.org/Article400%20Magic al%20Medicine.htm). ME FACTS Over 20 renowned international experts on ME have provided written statements of concern effectively stating that cognitive behavioural therapy and graded exercise therapy used to support the alleged existence of the “biopsychosocial model” do not work for people with ME (Magical Medicine pp 88-92). Furthermore, numerous trials have shown that not only is the “biopsychosocial model” unsuccessful in the management of ME/CFS but that the model itself is not evidence-based and it may be actively harmful: -the evidence that behavioural modification techniques have no role in the management of ME/CFS is already significant and has been confirmed by a study in Spain, which found that in ME/CFS patients, the two interventions used to justify the biopsychosocial model (CBT and GET) did not improve HRQL (health-related quality of life) scores at 12 months postintervention and in fact resulted in worse physical function and bodily pain scores in the intervention group (Nunez M et al; Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year follow-up. Clin Rheumatol 2011, Jan 15: Epub ahead of print) More Concerns About the Current UK Welfare Reform http://www.investinme.org/Article441%20UK%20Welfare%20Reforms.htm Invest in ME (Charity Nr. 1114035) ME STORY I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. Many days I feel utter despair. But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change. - Emily Collingridge Emily Collingridge passed away in March - losing her fight against this awful disease myalgic encephalomyelitis. These words were written over many weeks – while Emily still had the strength in her body to do so. http://www.investinme.org/EmilyCollingridge.htm www.investinme.org Page 98 of 108
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