ANNOUNCEMENT: SPRING 2011 NEWSLETTER HIGHLIGHTS
by Lydia Neilson
HIGHLIGHTS
QUEST NO. 87
SPRING 2011
· Highlights of Dr. Peterson’s Calgary Conference
· Ottawa 2011: We’re up and running!
· Conference agendas
· BC Ministry approves $2-million study
· Aquaporin-4 protein control brain inflammation
· NIH State of the Knowledge ME/CFS Workshop
· New MEA funding for ME/CFS research
· Impact of FM on economy
· XMRV: Where are we at?
· Headaches – a worldwide health problem
· Findings shed doubt on ME/cancer link
· Virtual Health Library in Canada
· CRD leads initiative on transparencies in reviews
· In the Spotlight
PART II
THE JOURNEY
Issue No. 2
Highlights:
· Acupuncture for pain and fatigue
· Today’s youth are charting new territory
· Former MP supports group on disability benefits
· MESH Ottawa urgent need for volunteers
· Pageant winner with FM breaks silence
· Young ME/FM patients connect with social networking
· Blog profile: Living with ME/CFS, LYME & Rickettsial Disease
· U.S. survey portrays lives reshaped by FM
Publishing Date: Week of May 30, 3011
QUEST / The Journey is the quarterly newsletter of the National ME/FM Action Network and is free with an annual membership of $30.00
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, 6 months
ANNOUNCEMENT: DR. K.J. FRIEDMAN ON NIH WORKSHOP
by Lydia Neilson
Dear Friends:
Dr. Kenneth Friedman has written a summary and remarks on the national Institutes of Health State of the Knowledge ME/CFS Workshop held April 7 & 8, 2011. If you would like a copy of his report by attachment or by regular mail, please let me know and I will be pleased to send it to you. It is a little over 4 pages long.
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, 7 months
ANNOUNCEMENT: INFO ON MAY 12 ACTIVITIES REQUESTED
by Lydia Neilson
Dear Friends:
We would like to put information on our website of the May 12th International ME/CFS and FM Awareness Day.
If interested, please forward a report and picture/s if available to mefmaction(a)ncf.ca
Thanks
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, 7 months
ANNOUNCEMENT: MESSAGE FROM THE CEO
by Lydia Neilson
MESSAGE FROM THE CEO
MAY 12th INTERNATIONAL ME/CFS AND FM AWARENESS DAY
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)
and
Fibromyalgia (FM)
Florence Nightingale was born on that day and her birthdate was chosen by Mr. Tom Hennesay, Founder of RESCIND, Inc. not only due to her caring and compassion for the sick but also because she is thought to have been ill with ME/CFS and/or FM. Nevertheless, she continued to look after others from her bed.
Those of us who are involved in advocacy, support, education and research for ME/CFS and FM strive to do as Florence did so that the day will come that those ill can be diagnosed and treated in the same manner and with the same respect as those with other illnesses and afflictions.
A 2005 survey by Statistics Canada estimates that over 333,000 Canadians have been diagnosed with ME/CFS and 389,000 with FM. That is not taking into consideration those who have been misdiagnosed or undiagnosed. ME/CFS and FM affects all age groups, including children, all racial/ethnic groups and all socioeconomic levels.
Adults, children and young adults once enjoyed an active and healthy lifestyle are stricken and almost overnight become chronically ill. Many have to stop work while children and young adults leave school and their youth and carefree time of life has been taken away from them. When and if it will return is still not determined as research has not as yet found the answer to what is the cause of those illnesses and therefore no treatment is available. Symptoms are treated instead in an effort to reduce its effects.
What is it like to have ME/CFS or FM? Picture yourself getting up in the morning, already at a disadvantage of not having a proper sleep and a reduced amount of energy. As the day starts, and having no relation to anything mental or physical you do, your energy begins to drain from you and with it comes problems speaking, learning difficulties, doing tasks or activities etc. Where even a simple brushing of teeth can lead you back to bed.
Think of how it would feel that before you attempt to do anything you have to weigh the consequences of what you are going to undertake. For each mental or physical action there is a price to pay. You know you are up but you don’t know how long you will be up and when the symptoms of ME/CFS and FM overtake you and you are stopped in your track. When you can do your next task or activity is up in the air and any plans you make are always on the understanding that they may have to be aborted at the last minute. That is a day in the life of a person with ME/CFS and FM.
Take a moment to think of those you know who are ill and treat them with compassion and understanding. They cannot take their day for granted and knowing you care and believe in them may not change the illness but will bring them comfort.
The National ME/FM Action Network is the host of the 10th international research and clinical conference for ME/CFS, FM and related illnesses from September 22nd – 25th, 2011 here in Ottawa, Canada. This is a four-day professional conference consisting of workshops, meetings, lectures and one day for the general public and patients.
We need your help to spread the word and your financial assistance for the costs that come from such a huge undertaking. Bringing the researchers, clinicians and healthcare providers together from around the world presents the unique opportunity to share information and scientific knowledge.
Please join us in our quest. Together we can and will succeed.
May 12th A Day of Action.
Sincerely,
Lydia
For conference details and registration,
pleasee visit http://www.iacfsme.org and http://www.mefmaction.com
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, 7 months
ANNOUNCEMENT: REGISTRATION FORMS AVAILABLE
by Lydia Neilson
Hi Everyone:
If you would like a hard copy mailed to you of the registration forms for the 2011 IACFS/ME research clinical conference in September, please contact me and I will mail them to you. If you would like them as an attachment for your own use or for circulation, please let me know and I will be pleased to email them to you. Fax is also an option. Just give me your fax number.
You can also contact our organization at 613-829-6667 and leave a message where to send the registration forms and/or agendas and we will take care of it.
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, 7 months
ANNOUNCEMENT: CALL FOR ABSTRACTS - DEADLINE MAY 25, 2011
by Lydia Neilson
The 7th World Alliance for Risk Factor Surveillance (WARFS) Global
Conference
- Role of Surveillance in the Promotion of Health
Toronto, Ontario, Canada, 16-19 October 2011
Venue: Courtyard by Marriott Downtown Toronto, 475 Yonge Street, Toronto,
Ontario, Canada
**********************************************************************************
The 7th World Alliance for Risk Factor Surveillance (WARFS) Global
Conference
Call for Abstracts
We invite submission of abstracts of research, policy-based and
practice-based papers that support risk factor surveillance for
evidence-based public health, demonstrating the importance of this
information source to inform, monitor and evaluate disease prevention and
health promotion policies, services and interventions.
All abstracts must be submitted electronically on or before 25 May, 2011 by
completing the online submission form: http://warfs.carrfscanada.org/
La Septième conférence mondiale de la World Alliance for Risk Factor
Surveillance (WARFS)
- Rôle de la surveillance dans le contexte de la promotion de la santé
Toronto (Ontario) Canada, 16-19 octobre 2011
Endroit : Courtyard Toronto Centre-ville, 475, rue Yonge, Toronto (Ontario)
Canada
**********************************************************************************
La Septième conférence mondiale de la World Alliance for Risk Factor
Surveillance
Demande de résumés
Nous vous invitons à soumettre des résumés de recherche et de documents
fondés sur les politiques et les pratiques qui appuient la surveillance des
facteurs de risque en vue de prendre des mesures fondées sur des données
probantes en matière de santé publique, témoignant ainsi de l’importance de
cette source d’information dans le contexte d’éclairer, de surveiller et
d’évaluer les politiques, les services et les interventions en matière de
prévention des maladies et de la promotion de la santé.
Toutes les présentations doivent être soumises par voie électronique d’ici
le 25 mai 2011 en remplissant le formulaire de soumission en ligne et en
l’envoyant à l’adresse suivante : http://warfs.carrfscanada.org/
7ª Conferencia Mundial de la Alianza mundial para la vigilancia de los
factores de riesgo (WARFS)
– El papel de la vigilancia en la promoción de la salud
Toronto, Ontario (Canadá), 16-19 Octubre 2011
Sede: Courtyard by Marriott Downtown Toronto, 475 Yonge Street, Toronto,
Ontario (Canadá)
**********************************************************************************
7ª Conferencia Mundial de la Alianza mundial para la vigilancia de los
factores de riesgo (WARFS)
Convocatoria para el envío de resúmenes
Se abre la convocatoria para el envío de resúmenes de trabajos de
investigación, basados en políticas y en prácticas, que avalen la
vigilancia de los factores de riesgo en la salud pública basada en la
evidencia y que demuestren la importancia de esta fuente de información
para configurar, supervisar y evaluar las políticas de prevención de las
enfermedades y de promoción de la salud.
Todos los resúmenes deberán enviarse electrónicamente hasta el 25 de mayo
de 2011, cumplimentando el formulario en línea habilitado a tal efecto:
http://warfs.carrfscanada.org/
**********************************************************************************************************************************************
(See attached file: WARFS 2011 Call for Abstracts_En.doc)(See attached
file: WARFS 2011 Call for Abstracts_Fr.doc)(See attached file: WARFS 2011
Call for Abstracts_Sp.doc)
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, 7 months