NATIONAL ME/FM ACTION NETWORK PRESIDENT'S REPORT

Discussion in 'Fibromyalgia Main Forum' started by G, Sep 27, 2002.

  1. G

    G New Member

    Hi Everyone,

    It's been awhile since I've been on and welcome all new members. I recieved this in my email this am and thought Canadians, Americans and other countries would like to read this report.

    I hope I don't get in trouble , sorry ahead if I'm doing anything wrong.

    G

    NATIONAL ME/FM ACTION NETWORK
    PRESIDENT'S REPORT
    On our year from April 1, 2001 to March 31, 2002
    Septmber 20, 2002

    This has been a wonderful year. It started with the Consensus Meeting at the end of March and beginning of April 2001. As you know, it was a huge success. The air was loaded with electricity from the first day to the last and a Consensus was reached unanimously for the ME/CFS and FM Definitions, Diagnostic and Treatment Protocols.

    The ME/CFS definition is now in the hands of a medical journal and have been informed of a possible publishing date at the end of November 2002.

    We would like to thank Dr. Anil Jain of Ottawa, Ontario and Dr. Bruce Carruthers of British Columbia for the initial drafting of the ME/CFS and FM Definitions and Treatment Protocols and the Consensus Panel consisting of:

    FIBROMYALGIA EXPERT CONSENSUS PANEL: Dr. Steven Barron; Dr. Bruce Carruthers; Dr. Stu Donaldson; Dr. James Dunne; Dr. Emerson Gingrich; Dr. Dan Heffez, USA; Dr. Anil Jain; Dr. Frances Leung; Dr. Daniel Malone, USA; Dr. Thomas Romano, USA; Dr. Jon Russell, USA; Dr. David Saul; Dr. Donald Seibel.


    MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME EXPERT CONSENSUS PANEL: Dr. Allison Bested; Dr. Bruce Carruthers; Dr. Kenny De Meirleir, Belgium; Dr. Pierre Flor-Henry; Dr. Anil Jain; Dr. Pradip Joshi; Dr. Nancy Klimas, USA; Dr. Martin Lerner, USA; Dr. James Mc Sherry; Dr. Dan Peterson, USA; Dr. Peter Powles; Dr. Jeff Sherkey.

    We are deeply grateful to our Director of Education and Consensus Co-ordinator, Marjorie van de Sande. It could not have been done without her. Marjorie and the Fibromyalgia panel are now concentrating on the FM definition, diagnostic and treatment protocol and she is constantly in touch with the doctors on the panel. This document is even more difficult than the ME/CFS definition as the definition presently in existence concentrates on tender points but nothing else. She will keep us advised as to the status of that document as work progresses.

    In June 2001 we posted the TEACH-ME Sourcebook for Teachers of children with ME/CFS or FM on the web. While the document was still being worked on, it was important that we made it available to the teachers and parents as soon as we could. The problems facing parents with children with ME/CFS or FM without any materials made it difficult to help their children.

    This Sourcebook is now available in hardcover and we have been sending out this book on a regular basis. Of particular interest is The Myalgic Encephalomyelitis Association of Ontario situated in Toronto, who purchased 195 Sourcebooks through an Ontario Grant program and is placing this sourcebook into the hands of the Special Education teachers. They arrange meetings with those teachers, with follow-ups to make sure the document gets used. This document has already helped many parents who need special help for their children.

    There are other groups who have shown an interest in doing the same thing as the Myalgic Encephalomyelitis Association of Ontario. Some groups are raising funds particularly for the Source Book while others are trying to obtain a grant. We thank them all very much.

    This Sourcebook was the dream child of our former Youth Consultant, Kate Andersen, M. Ed. who enlisted the help of Dr. David Bell, a world-wide expert on ME/CFS on children and his assistant Mary Robinson who has a 12 year old daugher with FM. She also enlisted the help of Canadian teachers, disabled with ME/CFS or FM, who are members of our Network as they felt that children with ME/CFS and FM deserved ongoing and enriching education, no mater how ill or disabled they are. We are deeply indebted to Kate.

    I'm happy to announce that our Director, Odile Gérin, has taken on the responsibility of getting the Sourcebook translated into French and she has reported that it is proceeding nicely.

    We continue to get doctors and lawyers writing articles for our newsletter. Many times, these professionals approach us while at the beginning we had to make all the overtures. This is very rewarding as it gives us access to reports that others don't know about yet. It has resulted in communications between doctors and their peers and lawyers and their peers which was not always the case in the past.

    In June 2002 we held the 1st Annual Symposium on Parallels Between Post-Polio Sequelae, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia at the Holiday Inn in Markham, Ontario. The Hall held 400 people and it was packed. The Speakers were Dr. Elizabeth Dowsett of England who has a 40-year history of patients under her care who have been diagnosed with ME/CFS and Dr. Richard Bruno of the Post Polio Institute in the U.S.

    This all started as a result of a survey that was done with Dr. Bruno who is Chairperson of the International Post-Polio Task Force This survey was widely distributed in Canada to ME/CFS and FM people and by Dr. Dowsett who did the same thing in England. Dr. Bruno's research indicates parallels between Post-Polio Sequelae, ME/CFS and FM. Dr. Bruno's has published "The Polio Paradox - What you need to know. Uncovering the hidden history of Polio to understand and treat "Post-Polio Syndrome" and chronic fatigue.

    We are deeply indebted to Mary Ellen who managed to get hundreds of volunteers to help us at the Symposium, including the M.E. Association of Ontario who took it upon themselves to contact as many doctors or lawyers to this event. We also are grateful to Kate Andersen who introduced the speakers and kept the symposium running smoothly.

    In our efforts to continue to attract support from professionals, Dr. Bruno is now our Honorary Special Advisor on PPS and Dr. Dowsett is our Honorary International Advisor on ME/CFS.

    We are making arrangements to get an appointment with Anne McLellan, the new Minister of Health. As is always the case, whenever a new Minister of Health is appointed, we have to start a new relationship with the new Minister and brief her on our organization and awareness of ME/CFS and FM.

    We have accomplished many things and we have a lot to be proud of. We thank the support groups, the medical and legal professionals, and our members for their constant support. We could not have done it without you.

    Thank you all for your constant support.

    Sincerely,
    Lydia E. Neilson, President CEO
    NATIONAL ME/FM ACTION NETWORK
    3836 Carling Avenue
    Nepean, ON K2K 2Y6 Canada
    Tel. (613) 829-6667
    E-mail: ag922@ncf.ca



    [This Message was Edited on 09/27/2002]
  2. G

    G New Member

    Hi Everyone,

    It's been awhile since I've been on and welcome all new members. I recieved this in my email this am and thought Canadians, Americans and other countries would like to read this report.

    I hope I don't get in trouble , sorry ahead if I'm doing anything wrong.

    G

    NATIONAL ME/FM ACTION NETWORK
    PRESIDENT'S REPORT
    On our year from April 1, 2001 to March 31, 2002
    Septmber 20, 2002

    This has been a wonderful year. It started with the Consensus Meeting at the end of March and beginning of April 2001. As you know, it was a huge success. The air was loaded with electricity from the first day to the last and a Consensus was reached unanimously for the ME/CFS and FM Definitions, Diagnostic and Treatment Protocols.

    The ME/CFS definition is now in the hands of a medical journal and have been informed of a possible publishing date at the end of November 2002.

    We would like to thank Dr. Anil Jain of Ottawa, Ontario and Dr. Bruce Carruthers of British Columbia for the initial drafting of the ME/CFS and FM Definitions and Treatment Protocols and the Consensus Panel consisting of:

    FIBROMYALGIA EXPERT CONSENSUS PANEL: Dr. Steven Barron; Dr. Bruce Carruthers; Dr. Stu Donaldson; Dr. James Dunne; Dr. Emerson Gingrich; Dr. Dan Heffez, USA; Dr. Anil Jain; Dr. Frances Leung; Dr. Daniel Malone, USA; Dr. Thomas Romano, USA; Dr. Jon Russell, USA; Dr. David Saul; Dr. Donald Seibel.


    MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME EXPERT CONSENSUS PANEL: Dr. Allison Bested; Dr. Bruce Carruthers; Dr. Kenny De Meirleir, Belgium; Dr. Pierre Flor-Henry; Dr. Anil Jain; Dr. Pradip Joshi; Dr. Nancy Klimas, USA; Dr. Martin Lerner, USA; Dr. James Mc Sherry; Dr. Dan Peterson, USA; Dr. Peter Powles; Dr. Jeff Sherkey.

    We are deeply grateful to our Director of Education and Consensus Co-ordinator, Marjorie van de Sande. It could not have been done without her. Marjorie and the Fibromyalgia panel are now concentrating on the FM definition, diagnostic and treatment protocol and she is constantly in touch with the doctors on the panel. This document is even more difficult than the ME/CFS definition as the definition presently in existence concentrates on tender points but nothing else. She will keep us advised as to the status of that document as work progresses.

    In June 2001 we posted the TEACH-ME Sourcebook for Teachers of children with ME/CFS or FM on the web. While the document was still being worked on, it was important that we made it available to the teachers and parents as soon as we could. The problems facing parents with children with ME/CFS or FM without any materials made it difficult to help their children.

    This Sourcebook is now available in hardcover and we have been sending out this book on a regular basis. Of particular interest is The Myalgic Encephalomyelitis Association of Ontario situated in Toronto, who purchased 195 Sourcebooks through an Ontario Grant program and is placing this sourcebook into the hands of the Special Education teachers. They arrange meetings with those teachers, with follow-ups to make sure the document gets used. This document has already helped many parents who need special help for their children.

    There are other groups who have shown an interest in doing the same thing as the Myalgic Encephalomyelitis Association of Ontario. Some groups are raising funds particularly for the Source Book while others are trying to obtain a grant. We thank them all very much.

    This Sourcebook was the dream child of our former Youth Consultant, Kate Andersen, M. Ed. who enlisted the help of Dr. David Bell, a world-wide expert on ME/CFS on children and his assistant Mary Robinson who has a 12 year old daugher with FM. She also enlisted the help of Canadian teachers, disabled with ME/CFS or FM, who are members of our Network as they felt that children with ME/CFS and FM deserved ongoing and enriching education, no mater how ill or disabled they are. We are deeply indebted to Kate.

    I'm happy to announce that our Director, Odile Gérin, has taken on the responsibility of getting the Sourcebook translated into French and she has reported that it is proceeding nicely.

    We continue to get doctors and lawyers writing articles for our newsletter. Many times, these professionals approach us while at the beginning we had to make all the overtures. This is very rewarding as it gives us access to reports that others don't know about yet. It has resulted in communications between doctors and their peers and lawyers and their peers which was not always the case in the past.

    In June 2002 we held the 1st Annual Symposium on Parallels Between Post-Polio Sequelae, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia at the Holiday Inn in Markham, Ontario. The Hall held 400 people and it was packed. The Speakers were Dr. Elizabeth Dowsett of England who has a 40-year history of patients under her care who have been diagnosed with ME/CFS and Dr. Richard Bruno of the Post Polio Institute in the U.S.

    This all started as a result of a survey that was done with Dr. Bruno who is Chairperson of the International Post-Polio Task Force This survey was widely distributed in Canada to ME/CFS and FM people and by Dr. Dowsett who did the same thing in England. Dr. Bruno's research indicates parallels between Post-Polio Sequelae, ME/CFS and FM. Dr. Bruno's has published "The Polio Paradox - What you need to know. Uncovering the hidden history of Polio to understand and treat "Post-Polio Syndrome" and chronic fatigue.

    We are deeply indebted to Mary Ellen who managed to get hundreds of volunteers to help us at the Symposium, including the M.E. Association of Ontario who took it upon themselves to contact as many doctors or lawyers to this event. We also are grateful to Kate Andersen who introduced the speakers and kept the symposium running smoothly.

    In our efforts to continue to attract support from professionals, Dr. Bruno is now our Honorary Special Advisor on PPS and Dr. Dowsett is our Honorary International Advisor on ME/CFS.

    We are making arrangements to get an appointment with Anne McLellan, the new Minister of Health. As is always the case, whenever a new Minister of Health is appointed, we have to start a new relationship with the new Minister and brief her on our organization and awareness of ME/CFS and FM.

    We have accomplished many things and we have a lot to be proud of. We thank the support groups, the medical and legal professionals, and our members for their constant support. We could not have done it without you.

    Thank you all for your constant support.

    Sincerely,
    Lydia E. Neilson, President CEO
    NATIONAL ME/FM ACTION NETWORK
    3836 Carling Avenue
    Nepean, ON K2K 2Y6 Canada
    Tel. (613) 829-6667
    E-mail: ag922@ncf.ca



    [This Message was Edited on 09/27/2002]