ANNOUNCEMENT: OTTAWA 2011 UPDATE
by Lydia Neilson
Dear Friends:
Re: International IACFS/ME research & clinical
conference for ME/CFS, FM & related illnesses
I just wanted to bring to your attention that the complete programs for both the Professional and Patient/General Public conferences as well as registration details are now easily available on the IACFS/ME website at http://www.iacfsme.org and can be accessed from its Home Page.
Frequently Asked Questions (FAQ) are also on the Home Page.
The Ottawa Delta City Centre where the conference is being held here in Ottawa can also be found on the site and a link to the Ottawa Tourism Bureau.
There was a computer glitz at the Delta Hotel which has now been fixed so some of you may have gotten wrong information about availability. If you have any problems, please let us know.
Will keep you updated on developments.
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
For details on agendas and registration, please visit:
Member of www.iacfsme.org
12 years, 10 months
ANNOUNCEMENT: WEB TV PRESENCE FOR CFS
by Lydia Neilson
June 08, 2011 05:00 PM Eastern Daylight Time
Chronic Fatigue Syndrome to Get Web Television Presence
WASHINGTON--(BUSINESS WIRE)--A new Web-based television program aims to shine a light on Chronic Fatigue Syndrome, sometimes referred to by patients as “the living death” disease. The disease also is known by its old name – and the one favored by many patients – myalgic encephalomyelitis.
“In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS”
The program is called “M.E./CFS Alert” and can be accessed on the You Tube Channel LIMFIL88. The program will soon be accessible at www.whchronicle.com, the Web site of the weekly news and public affairs television program “White House Chronicle.”
The program was conceived by Llewellyn King, a Washington columnist and executive producer and host of “White House Chronicle” and Deborah Waroff, a New York writer and security analyst, who has suffered from the disease for 22 years.
“This is a terrible, debilitating and essentially lifelong disease which, like AIDS, suppresses the immune system. Our program has three objectives: to comfort the suffering; to change attitudes among physicians and medical institutions, and to implore the government to provide critically needed research funds,” Waroff said.
An estimated 1 million Americans are so severely impacted by the disease that for months and years they are house-bound. Worldwide some 17 million have lost the ability to lead normal lives and work.
Often those who have suffered total physical collapse are ostracized because of bigotry and ignorance. Institutions, like Britain's National Health Service, treat M.E./CFS as a psychiatric disease, even though patients are in great physical pain.
The disease knows no economic, geographic or social boundaries. Author Laura Hillenbrand is the best-known American victim.
“In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS,” King said.
The first program is an interview with pioneering M.E./CFS doctor Derek Enlander.
Contacts
White House Media LLC
Llewellyn King, 202-662-9731
lking(a)kingpublishing.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
For details on agendas and registration, please visit:
Member of www.iacfsme.org
12 years, 10 months
ANNOUNCEMENT: VIVINT CONTEST TO HELP FUNDRAISING
by Lydia Neilson
There is an Event set up on Facebook on behalf of the National ME/FM Action Network for a chance to win $100,000. Please join and you will get daily reminders to vote with link to click and vote- it then is super easy and takes 2 seconds.
Feel free to pass it on to Facebook friends, email friends with Facebook, and any other media to get more attention.
A great opportunity to support those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Fibromyalgia.
Vote Daily for National ME/FM Action Network in Vivint Contest June 14 - Aug 27th.
HOW?
Vote every day from June 14 through Aug 27th.
It's easy - just go to http://www.vivint.com/givesbackproject/charity/855 on Facebook.
click LOGIN then scroll to the bottom and click ENDORSE.
The first time you vote you may be promoted to LIKE the Vivint page
http://www.facebook.com/VivintHome.
A daily reminder message will be sent to you with the link.
----------------------------------
WHO AND WHY?
Help the National ME/FM Action Network win $100,000 by placing first in the Canadian Region in the Vivint Contest. The National ME/FM Action Network is the host of the International IACFS/ME Scientific Conference being held in Ottawa Sept 22-25. The International Clinical and Research Conference is called "Translating Evidence into Practice" for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
This conference is vital to allow scientists to meet and learn about the lastest information about ME and FM. See www.iacfsme.org for more information about the conference.
The National ME/FM Action Network spearheaded the drive for a clinical case definition, and diagnostic and treatment protocols for ME/CFS and FM, The Canadian Consensus Guidelines!
Remember: Vote every day from June 14 through Aug 27th.
For more Facebook info go to:
https://www.facebook.com/event.php?eid=110293289062328
There will also be updates and comments posted there
Pass it on.
Thank you for your support.
The National ME/FM Action Network Facebook Team
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
For details on agendas and registration, please visit:
Member of www.iacfsme.org
12 years, 10 months
CORRECTION
by Lydia Neilson
Sorry everyone, the IACFS/ME website address should read
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
For details on agendas and registration, please visit:
Member of www.iacfsme.org
12 years, 10 months
ANNOUNCEMENT: OTTAWA 2011 UPDATE
by Lydia Neilson
Dear Friends:
The conference detailed agenda and registration information for both the medical professionals and patient/general public is now available at the website of the IACFS/ME at http://www.iamecfsme.org
There is also a FAQ for frequently asked questions conveniently placed on its Home Page.
You can register online,fax or mail in your registration forms along with payment. Either Canadian or American funds are accepted. Please make cheques payable to the IACFS/ME.
For updates on the conference, you can also visit the National ME/FM Action Network, host of the International IACFS/ME Conference at http://www.mefmaction.net
To contact the IACFS/ME by phone, call 847-258-7248
By Fax: 847-579-0975
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
For details on agendas and registration, please visit:
Member of www.iacfsme.org
12 years, 10 months
Sorry
by Lydia Neilson
Dear Friends:
It looks like I was deceived and learned another lesson. I'm terribly sorry for my last email about Don't Dance. It is spam.
I humbly apologize for my error.
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
For details on agendas and registration, please visit:
Member of www.iacfsme.org
12 years, 11 months
Slow Down - Don't Dance So Fast
by Lydia Neilson
Dear Friends:
I do not usually pass on messages unless I am sure I know it is legitimate. I am making an exception in this case. Whether legitimate or not, the message is powerful in itself and I do not want to take the chance that if it is legitimate that I failed to help fill her last request.
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
Begin forwarded message:
>
> Date: June 6, 2011 1:28:47 PM EDT
> To: undisclosed-recipients: ;
>
>
>
>
> Subject: FW: Slow Dance (don't delete, please read)
> Date: Sat, 4 Jun 2011 21:21:07 -0400
>
>
>
>
>
>
>
>
>
> Slow
> Dance
>
>
> This
> is a poem
> written by a teenager with cancer.
>
>
>
> She wants to
> see how many
> people get her poem.
>
>
>
> It is quite the poem
> Please pass it
> on.
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> This
>
> poem was written by a terminally ill young girl in a
> New York
>
> Hospital.
>
>
>
> It was sent
> by
>
> a medical doctor -
> Make sure to read what is in the closing statement
> AFTER THE
> POEM.
>
>
>
>
> SLOW DANCE
>
>
>
> Have you ever
> watched
> kids
>
>
>
> On a merry-go-round?
>
>
>
> Or listened to
> the
> rain
>
>
>
> Slapping on the ground?
>
>
>
> Ever followed a
>
> butterfly's erratic flight?
>
>
>
> Or gazed at the sun into the
> fading
> night?
>
>
>
> You better slow down.
>
>
>
> Don't
> dance so
> fast.
>
>
>
> Time is short.
>
>
>
> The music
> won't
> last.
>
>
>
> Do you run through each day
>
>
>
> On
> the
> fly?
>
>
> When you ask How are you?
>
>
>
> Do you hear
> the
> reply?
>
>
>
> When the day is done
>
>
>
> Do you lie
> in your
> bed
>
>
>
> With the next hundred chores
>
>
>
>
> Running through
> your head?
>
>
>
> You'd better
> slow down
>
>
>
> Don't dance so
> fast.
>
>
>
> Time is
> short.
>
>
>
> The music won't
> last.
>
>
>
> Ever told your
> child,
>
>
>
> We'll do it
> tomorrow?
>
>
>
> And in your
> haste,
>
>
>
> Not see
> his
>
> sorrow?
>
>
>
> Ever lost
> touch,
>
>
>
> Let a good
> friendship die
>
>
>
> Cause you
> never had time
>
>
>
> To call
> and say,'Hi'
>
>
>
> You'd
> better slow down.
>
>
>
> Don't dance
> so fast.
>
>
>
> Time
> is short.
>
>
>
> The music won't
> last..
>
>
>
> When you run
> so fast to get somewhere
>
>
>
> You
> miss half the fun of getting
> there.
>
>
>
> When you worry and hurry
> through your
> day,
>
>
>
> It is like an unopened
> gift.....
>
>
>
> Thrown
> away.
>
>
>
> Life is not a
> race.
>
>
> Do take it
> slower
>
>
>
> Hear the
> music
>
>
>
> Before the song is
> over.
>
>
>
> ------------
> --------
>
>
>
> FORWARDED
> E-MAILS ARE TRACKED TO OBTAIN THE TOTAL
> COUNT.
>
>
>
> Dear All:
> PLEASE pass this mail on to everyone you know -
> even to those you don't
> know! It is the request of a special girl who will soon
> leave this world
> due to cancer.
>
>
>
> This young girl has 6 months left
> to live,
> and as her dying wish, she wanted to send a letter telling everyone to
>
> live their life to the fullest, since she never will.
>
>
>
>
> She'll
> never make it to prom, graduate from high school,
> or get married and have a
> family of her own.
>
>
>
> By you sending
> this to as many people as
> possible, you can give her and her family a
> little hope, because with every name
> that this is sent to, The American
> Cancer Society will donate 3 cents per name
> to her treatment and recovery
> plan.. One guy sent this to 500 people! So I know
> that we can at least send
> it to 5 or 6. It's
> not even your money, just
> your
> time!
>
>
>
> PLEASE PASS ON AS A LAST REQUEST.
>
>
>
>
> 10461
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> .
> <stampa_girl_line_en.gif>
>
>
>
> No virus found in this message.
> Checked by AVG - www.avg.com
> Version: 10.0.1209 / Virus Database: 1500/3597 - Release Date: 04/25/11
> No virus found in this message.
> Checked by AVG - www.avg.com
> Version: 10.0.1321 / Virus Database: 1500/3598 - Release Date: 04/26/11
> No virus found in this message.
> Checked by AVG - www.avg.com
> Version: 10.0.1375 / Virus Database: 1509/3655 - Release Date: 05/23/11
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
For details on agendas and registration, please visit:
Member of www.iacfsme.org
12 years, 11 months
ANNOUNCEMENT: FAILURE TO ACCOMMODATE AWARD
by Lydia Neilson
FAILURE TO ACCOMMODATE LEADS TO HUMAN RIGHTS AWARE
PUBLIC SERVICE LABOUR RELATIONS BOARD
BETWEEN: NATHALIE CYR, Grievor
AND:
TREASURY BOARD
(DEPARTMENT OF HUMAN RESOURCES & SKILLS DEVELOPMENT, Employer
Project Manager, Nathalie Cyr, works in the Department of Human Resources and Skills Development, Service Canada. In February 2007 Ms Cyr filed a grievance alleging her employer had harassed and discriminated against her and failed in its duty to put in place and maintain accommodations to address her physical limitations due to environmental hypersensitivity she acquired.
Ms Cyr was relatively healthy until she was transferred to her new workplace location in 2004. One month after working there, she started to feel tired, had headaches and sinus pain one hour after she would arrive at work but the symptoms would disappear when she left. She requested and was permitted to work from home as a teleworker and only return to her workplace a few times a week. Eventually, she was requested to return to full-time employment at her workplace which led her to filing a grievance in 2007.
On March 22, 2011 her grievance was allowed and the employer was ordered to pay Ms Cyr, within 60 days:
· $8,000 for pain and suffering she experienced;
· $10,000 as a special award pursuant to subsection (53(3) of the Canadian Human Rights Act; and
· $300 for the medical certicate.
File No. 566-02-2173
Citation: 2011 PSLrB 35
For further details, please view http://pslrb-crtfp.gc.ca/decisions/fulltext/2011-35_e.asp
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
Member of the IACFS/ME
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
For details on agendas and registration, please visit: www.iacfsme.org
12 years, 11 months
ANNOUNCEMENT: ABOUT THE NATIONAL ME/FM ACTION NETWORK
by Lydia Neilson
Dear Friends:
As there are many who are enquiring about the National ME/FM Action Network and more so as we have a new website and the host of the research and clinical conference in Ottawa in September, I thought I would simplify matters and just let you know in a nutshell about our organization.
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
1. A registered Canadian all-volunteer charity established in 1993 with a world-wide outreach and proven track record;
2. ACTION-oriented;
3. Spearheaded the Working Case Clinical Definitions, Diagnostic & treatment Protocols for ME/CFS and FM – Consensus Documents, known world-wide as the Canadian Definitions;
4. Responsible for the publishing of the definitions which led to the establishment and publishing of the ME/CFS and FM Overviews;
5. An active website with a presence on Facebook, Twitter and www.ME-CFSCommunitiy.com;
6. Hosts conferences and host of the 10th international IACFS/ME clinical and research conference for ME/CFS, FM and related illnesses in Ottawa on September 22nd to 25th, 2011.
7. Publishes a quarterly newsletter QUEST on medical, research and legal matters and now includes a section entitled The Journey dealing with issues on treatment, support and empowerment to the ME/CFS and FM communities,
8. Sends out regular email announcements of interest to contacts on its roster; and keeps in touch with and collaborates with support Networks in Canada, the U.S. and the rest of the world;
9. Developed resource items, such as a Canada Pension Plan Disability Guide, TEACH-ME Sourcebook for Teachers and Parents, Legal Disability Manual etc.
10. Intervenes in precedent-setting court cases; and supports scientific endeavours.
Our annual membership of $30.00 is open to everyone world-wide and includes our quarterly newsletter QUEST .
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org
12 years, 11 months