One Click NICE CFS/ME Guidelines Judicial Review Update

25 February 2008: One Click NICE Judicial Review Campaign Update 4. One Click Group Director Jane Bryant writes: Dear All I write to you today on a subject very dear to the hearts of hundreds of thousands of people around the world - the One Click Judicial Review of the appalling CFS/ME Guidelines produced by the National Institute for Health and Clinical Excellence (NICE) in the United Kingdom. So often I have wanted to write to you on this subject. To explain the weaving, the ducking and diving, the secretive duplicity and the sheer political malfeasance carried out by some over this court case. Each time I have stayed my hand. Stayed my hand in the hope that the sheer grinding hard work going on behind the scenes of this case would improve our position. It is my happy duty to announce to you today that thanks to the formidable representation carried out by our excellent lawyers Saunders Solicitors LLP and the work of One Click conjoined to help ME/CFS labelled patients, we have very good news to impart.One Click NICE Judicial Review Background One Click is taking on new global readers every day of the week and so I feel that it is beholden upon me to provide a short backgrounder for everyone in relation to this momentous High Court case. For many years, the One Click health advocacy pressure group has been a Registered Stakeholder on the development of the CFS/ME NICE Guidelines since their inception. One Click submitted our material to NICE contributed by patients, doctors, academics, health advocates, carers, families and friends from around the world. No matter how many obstacles were put in our way by NICE, we overcame them to submit our formal evidence. See The One Click Group Response - CFS/ME NICE Guidelines, submitted to NICE on 16 November 2006 and updated by us on 6 October 2007. Upon publication of these Guidelines in August 2007, it became abundantly clear that our formal representations to NICE by due process, along with many other Stakeholders besides, had made absolutely no difference. That the entire production and publication of these Guidelines had been unlawfully hijacked by the psychiatric lobby that has been permitted by government to control all research and treatment on ME/CFS in the United Kingdom for many years. In October 2007, One Click therefore formally and publicly announced our intention to take NICE to the High Court for Judicial Review of these Guidelines. Our announcement was sent to the NICE Chairman Michael Rawlins, Chief Executive Andrew Dillon and various NICE personnel. We subsequently approached the Legal Services Commission (Legal Aid) for their assistance in funding this momentous case. The Legal Services Commission complied. It provided us with initial funding to work with our formidable barrister, Kate Marcus from Doughty Street Chambers and to lodge our Application with the High Court. See 21 November 2007 Press Release, Health Advocacy Pressure Group Launches NICE High Court Action Today. Fundraising In December 2007, the Legal Services Commission asked us to raise £10,250 as our financial contribution for this case against NICE to be brought in the name of your young Ben, The One Click Group Technical Director. With great difficulty and with excruciating hard work, we raised the pain-soaked thousands of pounds demanded by them. From around the world we collected your financial pledges to fight this case, sent direct to Saunders Solicitors LLP. From a little boy donating his pocket money from the United States to an entire church congregation in the UK, the funds arrived from patients, their carers, families, friends, doctors, academics, researchers and selected charities from around the world. £5 here, £10 there and a bit more from those who could afford it. From Switzerland, Australia, the United States, Germany, France, New Zealand, South Africa, South America, Canada and the United Kingdom to name but a few, in came your contributions to challenge NICE in the High Court frequently accompanied by your words. The words of pain, medical neglect, malfeasance and of the psychiatric lobby manipulation of this neurological illness - your heartbreaking stories flooded in to One Click and its lawyers. Your response to us was so great. We immediately recognised that we are making legal history with this case. Never has anything like this been done anywhere else in the world before. The very idea of the Legal Services Commission forcing us to raise so much money to challenge deeply flawed government policy made me feel utterly sick because it fundamentally and completely conflicts with access to justice and the very concept of political democracy. Nonetheless we complied. Saunders informed the Legal Services Commission that we had reached their £10,250 target and on 20 January One Click published Very Simply We Did It to announce this momentous news. Breaking News Nothing is ever simple and straightforward with a case like this. To our considerable dismay – nay outrage - the Legal Services Commission response to our £10,250 contribution was to elect to deny us the funding that we required to place our expert witness testimony before the High Court. Lest we forget dear friends, the Legal Services Commission is a government-funded quango with a Legal Aid budget of £2 billion. See The Times, Public Let Down By Legal Services Commission. At that juncture it seemed to us that above all, the British government wished to place obstacles in the way of the pro bono expert witness testimony of Dr Bruce Carruthers - one of the foremost leading experts in the world on ME/CFS and whose international medical consensus Guidelines make those of NICE look like fatal amateur night – surfacing in the High Court. Dr Bruce Carruthers is the lead author and co-editor of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (The ME/CFS Canadian Guidelines). Funded by government, the ME/CFS Canadian Guidelines incorporate most all scientific research done on ME/CFS for the last ten to fifteen years. Produced by a process of international consensus by a panel of scientists and expert physicians who have between them diagnosed/treated over 25,000 patients around the world, the ME/CFS Canadian Guidelines are the most advanced, consensual, clinical diagnostic criteria on this illness available in the world today. As such, they have long symbolised the wooden stake in the psychiatric lobby vampire heart ever since their publication in 2003. Previously a Research Scholar on the Medical Research Council of Canada amongst his many other senior posts, Dr Carruthers is without doubt one of the greatest ME/CFS experts alive in the world today in regard to criteria and guidelines over this neurological illness, classified as such by the World Health Organisation under ICD.10 G93.3. It was this man's expert witness testimony that the Legal Services Commission was refusing to allow us to place before the Judge together with other expert testimony on the issue of Randomised Clinical Trials - the very base upon which these entirely flawed Guidelines have been predicated. Had this Legal Services Commission funding refusal been allowed to stand, it would have represented the most crashing injustice and would have naturally caused worldwide outrage. We are now pleased to report that on the 20 February 2008, the Legal Services Commission were obliged to reconsider their position after the excellent work carried out by Saunders Solicitors LLP and The One Click Group conjoined in dedicated advocacy for patients. We would like to thank the Legal Services Commission for this latest decision and take this opportunity to gently remind them of their mission statement that announces:"Our work is fundamental to social and legal justice. In a democratic society all citizens have a right to access justice and get a fair trial." It is to this government-funded quango’s credit that they finally elected to see the legal light. I could go on at considerable length regarding the machinations of a High Court trial such as this that the British government simply does not want to happen, but it would serve no practical and useful purpose to blow the lid off the proceedings at this stage. What presently matters is that we have at last been granted the funding for our expert witnesses and our case is now full-steaming ahead. Sir Winston Churchill, British politician 1874 -1965, knew what he was talking about when he said, "The chain of destiny can only be grasped one link at a time." We have grasped our latest link most firmly and are now on to the next, employing the professional vice-like tenacity grip on your behalf for which One Click has become so famous. I would like to personally thank the expert witnesses who are providing pro bono medical testimony for our case in the High Court. I would like to particularly thank Saunders Solicitors LLP for their superb handling of legal events and also to thank our barrister Kate Marcus from Doughty Street Chambers who is now in a position to work up our expert evidence. But above all I would like to thank YOU. All of you from around the world who are making this case possible. I quote from the document Very Simply We Did It: “What this campaign has so starkly illustrated is that it is entirely possible for patients and their extensive friends around the world to band together and fight back to correct injustice. The days of the Expert Patient and their associates making their voices formally and legally felt have now arrived at last thanks to you all." Between us all from around the world, we have created a legal fighting force that will not be denied. I will be writing to you all further anon as our legal challenge of the appalling CFS/ME NICE Guidelines in the High Court progresses. Some of the information that I will doubtless have to impart to you all in the future may well rock you to your foundations. Onwards and upwards dear friends. Our legal course is set fair.