The National ME/FM Action Network is approached Nationally as well as Internationally to participate in getting surveys done or spread information. This is from the medical and legal professionals as well as from groups and organizations. Research and the information it brings forth has no value if it isn’t spread and therefore creating awareness which will lead to more research. Research leads to discoveries which will lead to treatment. By cooperating in this way, and by the technologies available, it is now possible to reach out far and wide so that the day will come that there is no place on earth that people are lacking support.

Here are some of the highlights of the National ME/FM Action Network towards this goal:

Dr. Richard Bruno HD,PHD: Study on Post-Polio Sequelae, and its possible relationship to ME/CFS and FMS. Dr. Bruno indicated that evidence suggests that a childhood poliovirus infection may cause chronic fatigue in “baby-boomers”. His survey was placed on our website as well as enclosed with our newsletter.

Dr. Walter Potaznick, OD, FAAO, of New England College of Optometry, and his Eye Symptom survey and our Canadian participation;

Dr. Leslie Simpson: Study of changes in the shape of the red blood cell population of the ME/CFS and FMS population and sponsored the collection of blood samples from interested ME/CFS and FMS people in Dr. Simpson’s research of blood cell analysis due to his research indicating a concrete quantitative difference between ME/CFS and FMS’ people’s blood and normal controls.
Conducted a survey with the assistance of the ME/CFS and FMS communities by asking doctors their opinion about these illnesses. Of the replies received from the physicians, only one believe it did not exist. Of the 151 replies from doctors across Canada who are diagnosing and treating ME/CFS and FMS patients, only 4 will see new patients due to the large volume of people who are asking for their help. As a result, we are unable to publish our National Doctors’ Roster for referral purposes.
Participation in survey conducted by the Harborview Medical Center at the University of Washington who intended to develop a new twin registry on ME/CFS and FMS.

Blood drive of ME/CFS and FMS people for Ms Panjwani’s Canadian research study which indicated abnormal levels of the blood enzyme 2,3,diphosphoglycerate in their blood;

Participation in CFIDS Massachusetts ‘Quality of Life Survey”
Participation in “Quality of Life Survey” by HSCNews International. An independent publication for health advocates, in collaboration with the Quality Project and UK-based prestigious patient groups, medical professionals, academics and journalists.

The objective of this Survey was to develop an index that could measure how effective each individual medical treatment, type of care/support had at improving the quality of life of people, determined by the individual on a chronic illness or long-term disability.
Conducted a survey by sending a questionnaire to 200 doctors knowledgeable about ME/CFS and FMS requesting what they felt was the most important thing to be done towards recognition of these illnesses and how to assist the medical community. Approximately 150 doctors replied and all voiced the opinion that clinical definitions and treatment protocols for these illnesses are of prime importance.
Recruited Drs. Anil Jain and Bruce Carruthers, two of Canada’s top experts in 2001 in ME/CFS and FMS who co-authored the draft clinical definitions, diagnostic and treatment protocols. Two Panels of Expert Doctors worked for 3 days to finalize the documents and unanimously came to a consensus. These documents were later published in medical journals. Overviews of these definitions have now been translated in other languages. They have become known as the Canadian Definitions and considered the best to date and are frequently used in research.
Participation in the Canadian ME/CFS Conference in Calgary, April 1-2, 2006 through supporting Dr. Ellie Stein of Calgary who was responsible for this non-profit event The National ME/FM Action Network worked in collaboration with FM-CFS Canada, the ME/FM Society of Alberta, and the ME Society of Edmonton.
As a result of the establishment of the Canadian Working Case Clinical Definitions, Diagnostic and Treatment Protocols for both ME/CFS and FMS that was spearheaded by Lydia Neilson, Dr. Alison Bested did a presentation to the Ontario Medical Association while the Board of Directors of the Myalgic Encephalomyelitis Association of Ontario (MEAO) held meetings and did advocacy work with the Ontario Ministry of Health. This, coupled with MEAO’s members who wrote, called their MPPs and the Ministry of Health, resulted in a new K037 OHIP Billing Code for FMS and ME/CFS in Ontario.
Participation in The Center for Community Research at DePaul University, Illinois, U.S.A. which was studying fatigue in children and adolescents aged between 5 to 17. This questionnaire is used to assess chronic fatigue among children that under the age of 18. As chronic fatigue can cause serious problems in well being, educational achievement and social development, this survey was done in order to understand chronic fatigue syndrome in children and adolescents and to assess it.
Participation with the Myalgic Encephalomyelitis Association of Ontario and The Environmental Hypersensitivity Society by supporting their efforts in keeping the Environmental Health Clinic at Women’s College which were successful. This Clinic was critical in that it provides Fellowship programs to post grad physicians who want to learn about ME/CFS, FM and MCS. This clinic is also involved with research with the University of Toronto.
Due to the efforts of the National ME/FM Action Network, the Overviews of the ME/CFS and FMS Canadian Definitions are now available on the website of the Public Health Agency of Canada.
The National ME/FM Action Network will be hosting the 10^th International IACFS/ME International Research and Clinical Conference in Ottawa, Canada from September 22^nd to 25^th, 2010 at the Crowne Plaza. This 4-day medical professional conference aims to put together the medical professionals from around the work and will have workshops on ME/CFS and FMS as well as highlight the latest in research.

In addition, there will be a one-day conference for the general/patient population with relevant topics of interest to the ME/CFS and FMS communities.

More information on research as well as the history and highlights of achievements of the National ME/FM Action Network are available upon request and can be sent as an attachment via email. However, we hope to shortly be in a position to have this manual available on our website.