Date sent: Mon, 19 Aug 2002 Subject: Video of Canada Symposium Below are the details of the Video of the Canadian Symposium with Doctor Dowsett and Dr Richard Bruno. Video of the 2002 Canada Symposium. " Perhaps the attendees expected a dry presentation of research findings and a few intriguing similarities between ME/CFS, FM and PPS (Post Polio Sequelae). If so they would have been sorely disappointed. Both Drs. Bruno and Dowsett spoke with great humour and clarity - and immense compassion for patients. The parallels between ME/CFS, FM and PPs that they described were detailed, convincincing and mind-boggling" Canada "Quest". National ME/FM Action Network. Chronic Fatigue Syndrome is not about being tired all the time! Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) are Neurological Disorders involving the immune system, the neuroendocrine system, the muscles and the brain! National ME / FM Action Network's 1st Annual Symposium on Parallels Between Post-Polio Sequelae, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. June 15, 2002 Conference Speakers & Topics Dr. Elizabeth Dowsett is an internationally renowned expert on ME/CFS and is the founder of the CFS Diagnostic and Management Service, Essex, England. She has treated people with ME/CFS for forty years. Dr. Dowsett will describe the historic and viral parallels between these conditions based on her more than thirty years experience with Dr. Melvin Ramsay in treating and studying ME, She will also describe her ME Survey of 330,000 British school children. Dr. Richard L. Bruno is the world's leading expert on Post-Polio Sequelae (PPS). He is the director of the International Centre for Post-Polio Education and Research and Research and Fatigue Management Programs at New Jersey's Englewood Hospital and Medical Centre. Dr. Bruno will discuss the clinical and physiological parallels between PPS and CFS based on his 20 years of treating and studying polio survivors and patients with CFS. Dr. Bruno will discuss The Post-Polio Institute's comprehensive multidisciplinary treatment program for treating chronic fatigue and pain from any cause. He will also discuss the results of the 2001 International; ME/CFS Survey and sign his new book, The Polio Paradox: Uncovering the Hidden History of Polio to Understand and Treat "Post-Polio Syndrome" and Chronic Fatigue, to be published in June by Warner Books. Why Polio and PPS? Some of you have asked us to explain why we are having a symposium on polio and PPS when we are an organisation for people with ME/CFS and FM. Dr. Richard Bruno, one of our speakers, has been researching the late effects of polio (also known as post-polio sequelae or post-polio syndrome) for twenty years. What Dr. Bruno and others have found has led to Dr. Bruno starting a worldwide awareness campaign, trying to reach polio survivors, doctors and governments. He says: "There is no more time to waste" because people who had polio in the years before the vaccine became available are ageing and many are experiencing terrible deterioration in their functioning. Many have to go back to using assistive devices and can no longer work. Research shows these patients' neurons are dying. Dr. Bruno is referring to muscle neurons but also brain neurons. Not many people realise that the poliovirus target the brain stem and caused an "encephalitis" (brain infection). This brain stem damage can get worse with physical and metal stress and, in Dr. Bruno's view, this is what leads to many of the symptoms of PPS. When the neurons die, functioning gets worse unless the people slow down and get proper care. New Research on Parallels Between PPS and ME/FM Now about ME/CFS: Dr. Bruno's research has shown many parallels in signs and symptoms between PPS and ME/CFS. The most important parallel is the brain. Research shows that many viruses can damage the brain stem. Here enters the work of Dr. Elizabeth Dowsett, our other speaker, a doctor and researcher with thirty years of experience with people with ME/CFS. In January 2001, Dr. Dowsett gave a presentation on the parallels between PPS and ME to the British Parliament. Implications for Assessment of Disability and for Treatment Dr. Dowsett believes that the polio vaccine made room for other polio-like viruses (from the family of viruses called enteroviruses) to take over. According to Dr. Dowsett's research and other work, these other viruses may even hit some parts of the brain harder than in polio, judging by the brain fatigue and research on the ME/CFS brain. So, even if people with ME?CFS don't have paralysis and get as physically weak as people who had polio, they may be even more impaired in other ways. This has VERY IMPORTANT implications for assessment of disability and for treatment. Important Treatment Information Dr. Bruno says pacing, NOT cognitive behavioural therapy and NOT graded exercise, is the cornerstone of treatment for people with PPS and ME/CFS. The key message is that people with ME/CFS and PPS and some people with FM have demonstrated brain stem dysfunction. This explains a multitude of symptoms because the brain stem controls so many physical and mental processes. Dr. Dowsett supports this view As the Canadian Newsletter `Quest` reports, both Dr Dowsett`s and Dr Bruno`s presentations are amazing, Dr Dowsett tells of her work throughout the years on ME/CFS linking it up with the Post Polio Sequelae. Dr Bruno, himself a paraplegic after Polio, is admirable in his determination to get over to people the effects of PPS, ME/CFS. and what can be done to allow people to help themselves improve their quality of life. FVS Videos Denbigh, North Wales, have agreed to copy the video at a cost of £8, including P&P. It can be obtained via Barbara Turnbull, Clwyd ME Support Group, 2 Broadway, Connah`s Quay, Deeside, Flintshire, CH5 4LS. (01244 819315) Please send a cheque for £8 per video, payable to FVS Ten videos at a time need to be ordered to keep this cost. Videos for Canada and Europe are £11, inc P&P. Australia and Japan, £11-50p Barbara Turnbull mailto:clwydme@supanet.com