Wednesday, March 30, 2011

ATTENTION YOUNG PEOPLE!

ag922@ncf.ca writes:

ATTENTION YOUNG PEOPLE AROUND THE WORLD

 Speak Up About ME invites you to add your voice!

May 12th is ME/CFS Awareness Day.  On May 11, 2011 as part of my testimony at The Chronic Fatigue Syndrome Advisory Committee (CFSAC)  in Washington,  I will speak on behalf of those who became ill with ME/CFS before the age of 22 years.

If you had early onset ME/CFS (no matter where you live), you can participate by giving me your name  (real or alias) , age at onset, age at diagnosis, current age and the country you live in.    

Please send your information to 

HYPERLINK "http://www.speakupaboutme.org/contact-us" http://www.speakupaboutme.org/contact-us or  

HYPERLINK "mailto:SpeakUpAboutME%40gmail.com" SpeakUpAboutME@gmail.com

Please note that by giving me this information, you are giving me permission to use this information in my CFSAC testimony and at any other time when relevant to ME/CFS.

-            Send CFSAC a note (no more than five typed pages in length).

Explain why what happens in the US (in this case, about ME/CFS) matters to people in other countries.

Public comment to be given as printed material to CFSAC members for review, needs to be sent to the Executive Secretary at  HYPERLINK "mailto:cfsac@hhs.gov" cfsac@hhs.gov, prior to close of business on Monday, April 18, 2011.

            Watch the livestream (follow links from here http://www.hhs.gov/advcomcfs/meetings/index.html ) of the proceedings on May 10th and 11th (May 11th is Speak Up About ME). Watch the archives of CFSAC meetings. Encourage others to watch the livestream and view the archives. We have been told that viewing numbers (even of the archives) are taken very seriously. **

* Please note – submissions should be respectful. Constructive suggestions are especially useful. (Antagonism doesn't move us forward.)

**Also please note – on the afternoon of May 11th, participants (who are able to) will be meeting with congressional officials

"Members of the public not providing public comment at the meeting who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Executive Secretary, at  HYPERLINK "mailto:cfsac@hhs.gov" cfsac@hhs.gov, prior to close of business on Monday, April 18, 2011. Submissions are limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team upon submission of your materials to  HYPERLINK "mailto:cfsac@hhs.gov" cfsac@hhs.gov."

 HYPERLINK "http://edocket.access.gpo.gov/2011/2011-6702.htm" http://edocket.access.gpo.gov/2011/2011-6702.htm

Thank you,

Denise Lopez-Majano

"Speak Up About ME, Invisible No More!" - Let's Make This HAPPEN!!

 

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

NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL CONFERENCE - OTTAWA, CANADA

SEPTEMBER 22 - 25, 2011










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