[Nmefman] ANNOUNCEMENT - FIBROMYALGIA OVERVIEW NOW IN FRENCH ALSO

Dear Friends: We are pleased to advise that the Overview for Fibromyalgia, a summary of the Canadian Consensus Document, is now available in French on our website at http://www.mefmaction.net The Overviews were Co-authored by Bruce M. Carruthers, MD, CM, FRCP(C) and Marjorie I. van de Sande, B. Ed,Grad Dip Ed and have just been finalized. We are grateful and much appreciate the efforts of Dr. Carruthers and Marjorie for their work, not only on the Overviews but also on the Consensus Documents. Their valued would and that of the Consensus Panels are much appreciated. We also would like to thank the Public Health Agency of Canada who found the funds to get the Overview translated for us. For now, it is only available on our website and PHAC but we hope to have hard copies printed as soon as we find the funds to do so. It will then be offered at minimum cost to cover the printing and shipping services. Please find below an update and background on the Overviews from co-author, Marj van de Sande. 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 E-mail: ag922(a)ncf.ca Web: http://www.mefmaction.net Overviews of the Canadian Consensus Documents for ME/CFS and FMS - Update © Marjorie van de Sande, B. Ed., Grad. Dip. Ed. Consensus Coordinator & Coauthor of the Canadian Consensus Documents It is amazing to reflect back to early 1999, when Dr. Bruce Carruthers and I began working together drafting the Canadian Consensus Documents (CCD). What a lot of time and effort was involved in the several drafts! As soon as the members of the international Expert Consensus Panels were selected by Health Canada in December 2000, drafts were sent to them. After further input and revisions, there was one hundred percent consensus by all the members of both international Expert Panels on their respective consensus documents. Both documents were published in peer reviewed journals in 2003. The Canadian College of Family Physicians suggested that short overviews of the consensus documents may be of further assistance to busy medical practitioners. Subsequently, Dr. Carruthers, principal author of the ME/CFS Consensus Document and Co-Editor of the FMS Consensus Document, and I wrote Overviews of the CCD. Both the CCD and the Overviews were written independent of any organization. It was imperative that we owned the copyright so that we could ensure that the integrity of the Consensus Documents was maintained and we would have the ability to grant other organizations permission to reproduce or translate the Overviews. This would further our efforts to advance the current understanding of these illnesses and ensure that patients receive an accurate diagnosis and appropriate treatment in a timely fashion. In order to make this information accessible to as many people as possible, the Overviews are a not-for-profit project. People may also download their copy of the Overviews online. Canada In response to the announcement of the upcoming printing of the Overviews in 2006, numerous organizations across Canada joined in the order. The National ME/FM Action Network sent Overviews to the heads of relevant departments in medical schools, university medical libraries, colleges of physicians and surgeons, and rheumatologist (FMS Overview) throughout Canada. In addition, they sent Overviews to physicians of family medicine in the Maritime provinces, territories and Saskatchewan. As the proceeds from Dr. De Meirleir’s conference in Calgary and the sale of conference DVDs were designated for Alberta, Overviews were also sent to physicians of family medicine, neurologists, specialists in community health, specialists in internal medicine (Calgary), nursing schools (Calgary), specialists in cardiology, infectious diseases, clinical immunology/allergy (ME/CFS Overview) and some medical classes. The MEFM Society of BC [<http://www.mefm.bc.ca/>www.mefm.bc.ca] distributed Overviews to physicians of family medicine and neurologists in British Columbia. Some organizations sent Overviews to clinicians in their area while others bought them for their members. Many patients purchased copies for their doctors. Sharon Walker purchased 450 pairs of Overviews to distribute to medical practitioners in northern B.C. She stated, “People like you give me hope for a healthier Canada… One day I pray that all of our Canadian doctors have the booklets [Overviews] & … the "Teach-Me" book is in every school in Canada.” French Translations AQEM, in Quebec, had the ME/CFS Overview translated into French and distributed thousands of Overviews across Quebec. We greatly appreciate and thank the Public Health Agency of Canada for recently having the Fibromyalgia Overview translated into French. We hope it will “help more francophone Canadians get the medical help they need”, reported Lisa Underhill, Senior Chronic Disease Management Analyst. The translation is presently being reviewed by a medical doctor. After the final formatting and our stamp of approval, the National ME/FM Action Network will distribute the French translation of the FMS Overview. It is encouraging that the Public Health Agency of Canada website [<http://www.phac-aspc.gc.ca/>www.phac-aspc.gc.ca] also links to the Overviews. Conferences The Overviews have been given out at numerous conferences throughout Canada and other countries. For example, in Alberta they were given to attendees of Dr. David Bell’s symposium, Dr. Kenny De Meirleir’s Conference and the University of Calgary’s Medical School provided Overviews at their Continuing Education Conference on ME/CFS. Other Countries European Society for ME (European researchers) stated that the ME/CFS Overview “is an important document to have on a serious ME/CFS website.” The response from other countries was both surprising and exciting. Upon request, we gave the printing rights to one organization per country. They in turn agreed that all other organizations in their country could order the Overviews from them and everything would be done on a not-for-profit basis. United Kingdom: Jeff Brown of the East Anglia ME Patient Partnership reformatted the ME Overview to fit the size of paper used in the UK and Europe. Their first printing included orders from numerous organizations throughout the UK, Sweden, Norway, and the Irish ME/CFS Support Group purchased 3,000 ME/CFS Overviews, which they sent to primary health practitioners in the Republic of Ireland. Dr. Mitchell of the UK ordered 4,000 copies to distribute to primary health care practitioners in his area and to patients who are referred to his clinic. Excitement grew when Dr. Terry Mitchell MA MD FRCPath, Consultant Haematologist, and Professor L J Findley TD KLJ MD FRCP FACP Consultant Neurologist, UK stated, "We recommend and endorse the Canadian Consensus Document. We regard it as an extremely important contribution to understanding the physical basis of the condition.” Subsequently, printing rights for the UK were transferred to Invest in ME. [<http://www.investinme.org/>http://www.investinme.org ] Australia: The Alison Hunter Memorial Foundation was given the printing rights for the ME/CFS Overview for Australia and Chris Hunter has done an amazing job looking after the orders from organizations in that country. [<http://www.ahmf.org/>http://www.ahmf.org] Fibromyalgia South Australia reprinted the FMS Overview. Reprint permission was also given to other organizations in New Zealand and Denmark. Translations “We think the Canadian Consensus Document and your Overview of it are two of the most important documents about our dismissed illness. So we would like permission to publish … your so crucial work, in order to make able all Italian ME/CFS patients know it”. Gualtiero Zucconi, CFS Italia “It is very important to the lower countries to get this magnificent Canadian Document spread so literally everybody can read it. We want to make a difference in thinking and treating in these countries by your help. It is really necessary.” MEtrans, Netherlands Translating lengthy documents containing medical terms proved challenging and in some cases took approximately two years. Sometimes the Overview was transferred to a professional translator. It was also difficult for busy physicians to find time to review the translations for medical accuracy. The translations were sent to me for formatting and approval. My son, Bob, kindly formatted the covers and “stitched” the cover to the document. The finished Overviews were met with a sense of relief and celebration. Dear Marj, A thousand hugs to you!!!!! This is GREAT! I just got your emails. Wonderful. What a relief that it is done now! Thank you soooooo much for your work and your help! I'll put it immediately on my website. Regina Clos, professional translator, patient & advocate (Regina translated the ME/CFS Overview into German for Fatigatio [<http://www.fatigatio.de/>http://www.fatigatio.de] ) Cathy van Riel, who was not associated with any organization, did an excellent job translating both the ME/CFS and FMS Overviews into Spanish and had them reviewed by doctors. Cathy gave the finished translated Overviews to Spanish organizations and made them accessible online. CFS Italia had both the ME/CFS and FMS Overviews translated into Italian. [<http://www.cfsitalia.it/>http://www.cfsitalia.it] Variations of the Same Story World-Wide We know there is a lot of work to do in Canada as in other countries. But the UK and the Netherlands are the cradles of the prevailing misinformation. The UK has some strong patient organizations so the story of the patients’ plight in the low countries (Netherlands and Belgium) may paint the most poignant portrait. Not only is the ‘it’s all in your head/CBT/GET’ doctrine well enshrined, but the harsh attacks by Wesselyites on any who dare speak out about all the thousands of research studies confirming physiological abnormalities have intimidated many good doctors and advocates. Special recognition needs to be given to three organizations that had never worked together before, MEtrans, Steungroep ME en Arbeidsongeschiktheid and ME/CVS Stichting Nederland, for pooling their energy and resources to have the ME/CFS Overview professionally translated into Dutch. Press releases went out to doctors, organizations, politicians, etc. The organizations wrote to Health departments and emailed the Overview to thousands of contacts on their mailing lists. About that time, the Netherlands held its first conference on ME. A journalist wrote six pages about ME – XMRV, conference and the Canadian Overview/Consensus Document for a magazine. First time ever! Many recipients were unaware of the CCD – surprised but good reactions. An organization for ill children that supports CBT-GET, posted the Overview on their website. Organizations in Belgium quickly joined forces. MEtrans reports, “You have to imagine that this is completely new in ME world here (Netherlands and Belgium)… We still have to work very hard for a long time.” Excitement when a minister announced that there must be help for ME/CFS patients was quickly deflated when a GET organization told the minister that ME does not exist in adults. De Stichting was in contact with The Hague and there is hope that people with ME/CFS may be given permission to get help (wheelchairs, etc.) Government advocates the NICE criteria from the UK but they are now aware of the Canadian consensus criteria. As Government was in the process of changing, patients are hopeful that the new government will try the Canadian criteria. Patients have a huge amount of work to do but, “with a really good piece of work in our hands … I am really positive. Hope you can feel that in my writings and feel my hope and happiness. .. Thank you for your time, effort and communication. It was great. Thanks for everything. Hugs.” [name held in confidence] The Overviews are a Source of Hope The lack of knowledge and need to educate medical practitioners about ME/CFS and FMS is a world-wide problem. It is hoped that the Overviews are useful tools to: · enhance recognition and understanding of ME/CFS and FMS · generate greater and more accurate knowledge in the medical community · balance certain biases with credible medical research · enable sufferers to be treated with more respect and expertise This sense of hope was expressed repeatedly. “As this erudite and practical clinical tool [Overview of the Canadian Consensus Document for ME/CFS] becomes more widely read and applied, benefits to patients and positive changes in official ME policy will follow.” Jeff Brown, East Anglia ME Patient Partnership, UK “If the consultants took the central message of this document on board, we feel the General Practice doctors could gain knowledge and in turn the sufferers might be treated with a little more expertise. Congratulations on a terrific document.” Declan Carroll, Irish ME Trust We hope that the information and messages in the Overviews will spread like ripples in the water. For example, Dr. Pilar Reig of Spain recently wrote an article about the ME/CFS Overview for publication in the Magazine of the College of Physicians of Madrid. It has been extremely rewarding to get to know and work with wonderful, knowledgeable people in so many countries. One very positive outcome is that Overviews brought individuals and organizations together to join forces in their efforts to raise public awareness and enhance the knowledge about these illnesses, which will hopefully result in better treatment for patients. Dr. Carruthers and I would like to thank all the people involved for their dedication and perseverance. We want to credit all the members of the international Expert Consensus Panels for their gracious contributions to the Consensus Documents. A special thanks to Bob van de Sande, who designed the covers of the Overviews. He thought it was a one time job but formatted covers at least a dozen times and “stitched” them to the documents about twenty times. We feel blessed that we had the opportunity to assist others in some small way. Dr. Carruthers and I would also like to thank those who sent us such kind words exemplified by Chris Hunter’s note: “My heartfelt thanks for all the excellent work. I think we will be able to generate a significant boost to the recognition of ME/CFS and better care thanks to all your hard work. . . The Overview has been an absolutely wonderful help - far and away the best tool we have for doctors and for patients very validating. . . You have done a truly wonderful thing for every person with ME/CFS – one of the few documents I feel very proud to distribute - the quality of the publication brings credibility to everyone with the disease. Thank you so much.” Chris Hunter, Alison Hunter Memorial Foundation, Australia ***** Where to Purchase Overviews in North America The Overviews and translations can be found at <http://www.mefmaction.net/>http://www.mefmaction.net Everyone has permission to download their personal copy. ME/CFS & FMS Overviews – English: Marj van de Sande <mailto:mvandes@shaw.ca>mvandes@shaw.ca FMS Overview – French translation: National ME/FM Action Network 613-829-6667; <mailto:ag922@ncf.ca>ag922@ncf.ca; http://www.mefmaction.net ME/CFS Overview – French translation: AQEM <http://wwwaqem.org/>http://wwwaqem.org