[Nmefman] ANNOUNCEMENT: NIH STATE OF THE KNOWLEDGE WORKSHOP COMMENTS

Dear Friends: Val, a ME/CFS person, wrote the letter below and sent me a copy. I thought you might like to read what her reaction and thoughts are on the NIH workshop. Lydia Lydia E. Neilson, M.S.M. , Founder Chief Executive Officer NATIONAL ME/FM ACTION NETWORK 512 - 33 Banner Road Nepean, ON K2H 8V7 Canada Tel. 613.829.6667 Fax 613.829.8518 Email: mefmaction(a)ncf.ca www.mefmaction.com NIH STATE OF THE KNOWLEDGE WORKSHOP FOR ME/CFS - DAY 1 AND 2 , April 7 and 8, 2011. This is their first workshop of its kind. There will be reports generated on the progress from NATIONAL INSTITUTES OF HEALTH (USA) DAY 1 http://videocast.nih.gov/summary.asp?file=16575 DAY 2 http://videocast.nih.gov/summary.asp?live=10114 Hello friends, I wanted to share something pretty spectacular with you. Above are two links to a two-day workshop held in USA at the NIH. It was for ME/CFS and had about 23 experts and a full advocacy section with some patients lining the walls. The experts were in neurology, immunology, endocrinology, genomics, brain inflammation, exercise physiology, cardiology, energy metabolism, infectious diseases and system biology, as well as government bodies such as The Centers for Disease Control & Prevention (CDC) and the Food & Drug Agency (FDA) and Health and Human Services. I know you will not want to watch the whole thing, but just look at the agenda on the headers and click on Day 1 to witness what it is like after 25 years in North America and over 50 years in UK, to see people sharing their expertise and their research into their expertise of ME/CFS, as they try to work together to come up with more research that will help find biomarkers, objective diagnostic criteria, and trials for treatment. This is a pretty great thing for the experts in that room as well because they get to use each other as resources and plan strategies for research and treatment trials together using all their disciplines and institutions. It will also end up helping all other complex health issues in the future because ME/CFS is pushing medicine and technology together to create new ways of assessing and finding answers to complex problems. Although these matters are at the beginning, it fosters some hope, especially for the next generation to deal with ME/CFS. It is a powerful movement; and at the beginning, there is an address delivered by letter by the Secretary of Health, Kathleen Sebalius, the one who makes the decisions in health, and she finally acknowledges the ME/CFS crises as well as the severity of the suffering, the lack of care, unmet needs and the research funds necessary with the goal to give people a better quality of life. She has instructed her agencies to give it their full attention. This is a request only made this Spring. Everyone is facing forward and watering the tree of knowledge. However, the need to make anything happen is attached to the dollar. Please think of donating to those who are helping to affect awareness and change. Feel free to pass this message on to anyone who has an interest in medicine, ME/CFS, or the working of government on health issues. This is an American workshop, and Canada is politically and medically behind them (although there are movements forward starting to be seen in Canada this year with the IACFS Conference to be held in Ottawa in the fall and hosted by the National ME/FM Action Network). So feel free to speak to the politicians in your area or anyone with a political interest about Canada's lack of position and support on these issues. According to a 2005 survey conducted by Statistics Canada, 333,816 Canadians were diagnosed with ME/CFS, over 1 million Americans, as well as others world-wide. Last year Canada granted only enough money to CFS research to equal $12 per patient. I could do better with my wheelchair on a street corner. The average HIV/AIDS patients would have received $5,500 per person with 65,000 patients in Canada and they have effective treatment in place and have for quite a few years due to the funding and research that goes to their illness. ME/CFS needs equal attention and funding. Doctors that treat both HIV/AIDS and ME/CFS in the States are very clear that if they had to choose between the two illnesses and have one of them, in 2011, due to progress and treatment with AIDS, it would be an easy decision. They would rather have AIDS than CFS. That is quite a statement. It also helps me understand why I haven't been able to figure it out on my own when I see 23 geniuses in a room who are absolutely tested to the max to join the dots and come to some understanding of the complexity and seriousness of this illness, never mind how to effectively treat or cure. Keep watering that tree, Val NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA SEPTEMBER 22 - 25, 2011 Visit: www.iacfsme.org