IT’S OFFICIAL
NATIONAL ME/FM ACTION NETWORK
TO HOST INTERNATIONAL
IACFS/ME RESEARCH AND CLINICAL CONFERENCE
IN OTTAWA, CANADA
SEPTEMBER 22ND TO 25TH, 2011
AT
CROWNE PLAZA HOTEL
Conference Highlights
- XMRV and Virology. The role of XMRV in ME/CFS is an important and timely issue that will be determined by ongoing research. Right now, we have conflicting data and no answers. I expect in the next year that several new studies will be published. At the conference, we will schedule a full airing of XMRV evidence and what it means for people with ME/CFS.
- Canadian Definition of ME/CFS.
The 2003 Canadian case definition is emerging as the new standard for diagnosis. It better differentiates ME/CFS from psychiatric disorder and lesser forms of fatigue. The Canadian definition will be discussed by top research scientists and clinicians at the Ottawa meeting.
- New ME/CFS Clinical Guidelines for Physicians.
IACFS/ME is working on new concise guidelines for practicing doctors. The guidelines will be informed by current evidence and written by our medical experts who are both clinicians and researchers. The new guidelines will be presented at the conference.
[Note: These are some of the early highlights of the conference. Stay tuned for more news.]
Information for Presenters for Ottawa 2011
To select speakers and presenters for the conference, IACFS/ME will issue a call for abstracts in January 2011. A review committee will evaluate all submissions for (a) scientific merit and /or (b) clinical relevance/expertise. I want to encourage everyone who wants to present to submit abstracts. Abstracts will be considered for oral presentations or poster presentations. Specific submission information will be available when the call is issued.
Thank you for your interest.
Fred Friedberg, PhD
President
IACFS/ME
THE MISSION OF IACFS/ME
The mission of IACFS/ME is to advocate for high quality scientific research and effective public policy for CFS/ME. FM advocacy is also included in our mission statement. The reasons for including FM are as follows:
(1) About 1/3 to 1/2 of CFS/ME patients also have FM;
(2) There is considerable symptom overlap between the two conditions;
(3) There may be common mechanisms in these illnesses such as immune and neuroendocrine abnormalities.
Also feedback from our biennial conferences indicates that the attendees want more coverage of FM given that their CFS patients often have FM. That said, our last conference in Reno, Nevada contained only 2 presentations on FM out of 100 talks. So we do recognize FM, but it does not begin to overshadow our primary emphasis on CFS/ME.
I hope to see you in Ottawa.
Fred
Fred Friedberg, PhD, President
IACFS/ME
Some Facts About IACFS/ME
- Founded in 1990, it is the only international professional organization (500 members) dedicated to scientific advocacy and improved patient care in the area of ME/CFS.and FMS.
- It has held biennial international conferences since 1994
- It publishes an online peer review professional journal (quarterly; Bulletin of IACFS/ME) and an online newsletter (3x a year) with timely and important information for researchers and clinicians interested in ME/CFS http://www.iacfsme.org
- It is developing a track record to increase recognition of ME/CFS worldwide.
- n 2007, it presented a 2-day conference (1 day for professionals; 1 day for patients) in Oslo, Norway that resulted in increased government recognition and funding of ME/CFS programs.
- For more information on IACFS/ME, please visit its website at http://www.iacfsme.org
 |
|
Dr. Fred Friedberg, IACFS/ME president
|
Sincerely,
NATIONAL ME/FM ACTION NETWORK
Lydia E. Neilson, M.S.M. Margaret Parlor
Chief Executive Officer President
FUNDRAISING HELP NEEDED FOR MAJOR PROJECT
The National ME/FM Action Network needs your help for a major project - the hosting of the International Association ME/CFS (IACFS/ME) scientific and clinical conference to be held in Ottawa in 2011. Why? Because
it is an opportunity to have the best researchers in the world here in Ottawa, Canada to meet with our Government officials, Public Health Agency of Canada, Canadian Institutes of Health Research to advocate for more
research and service funding for ME/CFS and FMS.
For the first time the IACFS/ME conference will be open to presentations on Fibromyalgia and other forms of chronic disabling fatigue. It is a huge undertaking. The estimated funds needed to host this event are $150,000.
If any of you have contact with a philanthropist or business who may be able to assist with the fundraising and publicity required, please offer your assistance to the Network at http://www.mefmaction.net And if you think you
might be able to make the trip, start saving now. There is always a full day program for patients and patient advocates the day before the scientific program starts (September 22nd, 2011) and patients are welcome at the
scientific proceedings. At the IACFS/ME you are truly not alone. Information will be posted on our Network’s website and follow ups will be sent through email, snail mail and our QUEST newsletter.
Other ways you can help
Hold a collection at support group meetings;
Support groups could hold a garage sale of items members bring;
Gently-used clothing could be collected and sold;
Ask relatives and friends to contribute;
Ask in memoriam donations be made to the National ME/FM Action Network;
Those who can work can ask their employer to make their charitable donation to the National ME/FM Action Network;
If you make donations to other charities, consider the National ME/FM Action Network and ask relatives and friends to do the same;
If you give to the United Way, specify you wish your donation to go to the National ME/FM Action Network;
You can also donate through http://www.CanadaHelps.org;
If you are not a member, please join us. Our membership includes our quarterly newsletter “QUEST”
Let your imagination explore the ways you can donate.
Each one of you can make a difference and remember that all donors get a charitable receipt. No donation is too small and is important.
Thank you