THANK YOU
by Lydia Neilson
Dear Friends:
I am going on a "spontaneous vacation" for 3 days in about an hour as I have to take a break. However, before I do, I wanted to let you know how proud we all are of you at the Network. Your involvement and enthusiasm keeps us going. Thank you so much :)
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
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
14 years, 1 month
ANNOUNCEMENT: HEALTH CANADA HEALTH PROMOTION DAYS
by Lydia Neilson
Dear Friends:
I just wanted to let you be aware that on the Health Canada website on its Calendar of health promotion Days, you will find May 12 marked as Fibromyalgia and Chronic Fatigue Syndrome Awareness Day.
To view, go to: http://www.hc-sc.gc.ca/ahc-asc/calend/index-eng.php
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
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
14 years, 1 month
Announcement: Ottawa 2011 Conference Agenda
by Lydia Neilson
Dear Friends:
I wanted to let you know that I have made some easy agendas that can be emailed or sent by regular mail which consists of one page for the professional conference and one for the patient conference. If you would like me to send those to you by attachment, please let me know. If you would like me to send you copies by mail, just give me your name and mailing address and I will be glad to do so.
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
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
14 years, 1 month
ANNOUNCEMENT: OTTAWA 2011 CONFERENCE AGENDAS
by Lydia Neilson
IACFS/ME BIENNUEL CONFERENCE
Hosted by the NATIONAL ME/FM ACTION NETWORK
Translating Evidence into Practice
September 22-25, 2011 • Ottawa, Ontario, Canada
AGENDA
Conference Highlights
Latest Research on XMRV/MLVs
The case FOR Human Gamma Retroviruses (HGRV) in CFS/ME
The case AGAINST Human Gamma Retroviruses (HGRV) in CFS/ME
Debate
· F Fibromyalgia: Are Tender Points Necessary?
Research
· New findings: Blood XMRV Working Group on Blood Safety
· Latest findings
o immunology
o virology
o genomics
o brain and neuroendocrine function
o pediatrics
o exercise physiology
Clinical Practice Sessions
· Difficult Clinical Cases
· IACFS/ME Clinical Practice Guidelines: A New Primer
Professional Workshops
· Treating Sleep, Pain and Fatigue in ME/CFS Patients
· Fibromyalgia Theory, Assessment and Practice
· Behavioral Assessment and Treatment of ME/CFS
· Pediatrics and CFS/ME
· Exercise Intolerance: Guide to Management and Treatment
· How to Apply for Grants
It is anticipated that this event will be accredited for continuing medical education for Category 1 CME (physicians), CNE for nurses, and CPE for pharmacists.
Patient Agenda – September 22nd, 2011
Patient Conference Highlights
New Developments in Possible Causes of ME/CFS
New Research on What Helps People Cope with ME/CFS
Fibromyalgia: Current Status
Breakout Session: For parents of children with ME/CFS
Legal Aspects of Disability
Latest Research on the Pathophysiology of ME/CFS
Effective Management of Activity Intolerance
New Developments in Pharmacologic Treatments
Invited Speakers:
Anthony Komaroff, MD
Nancy Klimas, MD
Leonard A. Jason, MD
Charles Lapp, MD
Lucinda Bateman, MD
Rosamund Vallings, MB, BS
Hugh Scher (Attorney)
Annette Whittemore, WPI
For further information and registration for the conferences, please visit: http://www.iacfsme.org
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
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
14 years, 1 month
ANNOUNCEMENT: OTTAWA 2011 CONFERENCE DETAILS
by Lydia Neilson
ANNOUNCEMENT
RE: 10TH INTERNATIONAL IACFS/ME RESEARCH & CLINICAL CONFERENCE –
TRANSLATING EVIDENCE INTO PRACTICE
SEPTEMBER 22ND – 25TH, 2011
OTTAWA, CANADA
HOSTED BY THE NATIONAL ME/FM ACTION NETWORK
REGISTRATION NOW OPEN
FOR DETAILS, PLEASE VISIT:
http://www.iacfsme.org Home Page
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
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
14 years, 1 month
REMINDER - UPCOMING MEDICAL CONFERENCE IN CALGARY
by Lydia Neilson
Relevant to MDs, nurses, PTs, OTs, pharmacists & psychologists
Diagnosis and Treatment of Myalgic Encephalomytlitis/Chronic Fatigue Syndrome:
The Basics and Beyond
Dr. Daniel Peterson MD
· Internationally renowned clinician/researcher with 27 years experience in ME/CFS
· Co Author of the Canadian Consensus Criteria for ME/CFS
· Co Author of XMRV in ME/CFS study
Dr. Logan Chamberlain PhD
· Author "What the Labels won't tell you. A consumer Guide to Herbal Supplements" Presenting Herbal and CAM approaches to ME/CFS
Case Consultation and Networking Dinner
Friday April 29th, 2011
Accredited CME program for Medical Practitioners
Saturday April 30, 2011 9am - 5 pm
RCPSC up to 2.5 hour Category 3 Credit + up to 3.5 hours Category 1 Credit
CPFC up to 2.5 hour MAINPRO C Credit + up to 3.5 hours MAINPRO M1 Credit
Public Lecture
Sunday May 1, 2011 1:30 - 4:30 pm
all events at the Blackfoot Inn, Calgary
Full registration information at www.mefmaction.net scroll down the page
Or contact: Dr. Ellie Stein at: Ph: 403 287-9941 espc(a)shaw.ca
100% of profits will be donated to the ME-FM Action Network, a Federal Charity
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
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
14 years, 1 month
ANNOUNCEMENT: You Think I should Do what???? Go to a conference???
by Lydia Neilson
Dear Friends:
Karen, a ME/CFS person, has written an article about attending the IACFS/ME research and clinical conference which is 7 pages long and I can't send you except by attachment. Karen has done it in a very upbeat style and her sense of humour shines all through the article and what she has learned from attending past conference even though she is ill.
If you would like to read her report, please let me know and I will send it to you as an attachment or in the alternative by regular mail.
Please let me know.
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
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
14 years, 2 months
ANNOUNCEMENT: NIH STATE OF THE KNOWLEDGE WORKSHOP COMMENTS
by Lydia Neilson
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
14 years, 2 months
ANNOUNCEMENT: RESEARCH FUND FOR TRANSCRIPTION FACTORS STUDY
by Lydia Neilson
MEA ANNOUNCES RESEARCH FUND
March 31, 2011
The U.K. ME Association (MEA) has announced that its trustees have approved funding for a new research study investigating the role of transcription factors in ME/CFS. The peer-reviewed research will be carried out by Dr. Abhijt Chaudhuri, Professor Peter Behan, Professor John Gow, Professor Chris Hillier and Simone Hutchinson at the Glasgow Caledonian University.
Transcription factors are complicated proteins that act at a cellular level and are released in a cascading fashion following harmful stimuli, such as infections, trauma, exposure to toxins etc. and form a key part of the body’s initial defensive response. They assist in the process of ‘switching on’ genes and the activities they control.
The researchers will be investigating blood samples from four separate groups:
· People with well-characterized ME/CFS: Professor Behan will be doing the clinical assessments;
· Healthy Controls;
· People from Professor Gow’s research into gene expression; and
· Blood samples obtained from the CFIDS biobank facility in the United States.
The study is expected to take a year to complete and if significant abnormality in transcription factors is confirmed, it could lead to further research and therapeutic interventions.
More information on the Ramsay Research Fund can be found at MEA: www.meassociation.org.uk/?page_id=1086
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
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
14 years, 2 months