ATTENTION YOUNG PEOPLE AROUND THE WORLD
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!!