Tuesday, April 03, 2012

Speak Up About ME - Early Onset ME/CFS

I wanted to tell you about the latest awareness efforts from Speak Up About ME, a group started by the mother of two teen boys with severe ME/CFS to help bring more attention to the plight of kids, teens, and young adults with ME/CFS.  Increasing awareness of ME/CFS's effects on children will help all of us, by making the government, researchers, the medical community, and the general public more aware of the scope and severity of our illness.

First, Speak Up About ME has a new blog where you can go for the latest updates.  For now, this blog will take the place of the website that was previously set up because the person who was maintaining the website (an ME/CFS patient) is too sick to keep it up to date right now.

There are two projects currently being prepared in preparation for the May CFSAC meeting in Washington, DC (the date has not been announced yet).  I will just quote directly from Denise Lopez-Majano, founder of Speak Up About ME:

Early Onset ME/CFS List:
"I am again updating the early onset ME/CFS list.  If you came down with ME/CFS before age 23, contact me at speakupaboutme@gmail.com.


name (let me know if I should only use your first name or a nickname that
you provide),

age at onset,

age at diagnosis,

current age,

location (country is sufficient).

(Note - In providing this information, you grant permission for me to use
this list as I see fit. Example showing the CDC, NIH, DHHS, CFSAC,
media, etc. how many patients with early onset ME/CFS there are.)"
 Empty Chairs Project (for anyone unable to attend the CFSAC meeting, not just kids):

"We hope that you will join us in Washington for Speak Up About ME’s events which will coincide with the spring 2012 CFSAC meeting.  Realistically, we know that for (far too many) patients that  isn’t possible.
So, patients who cannot participate in person, here is  a way to be seen at the CFSAC.
Patients  – especially those with early onset ME/CFS (before age 23) -
Your photos are needed ASAP!!!
At the CFSAC this spring, we will revive The Empty Chairs Project. The project depicts anyone and everyone who would consider participating in the CFSAC
if they were able to do so.
For The Empty Chairs 2012 project, we need:
Photo(s) suitable for 8×10 inch print
Reason(s) you cannot be at the CFSAC *
Signed media release form **
Send photos, reasons and signed media release forms to SpeakUpAboutME at gmail dot com.
If you are providing public comment remotely (via DVD/phone) –send your photo. Someone will sit at the table and hold up your photo during your public comment. (Connecting a face with the public comment provides huge visual impact.)
Send photos of family members/friends, etc. who would like to participate in the CFSAC, but cannot be there and why. (for example – can’t afford to take additional time off from work, can’t afford the expenses and so on.)
Photos need to be jpeg format.
If your name cannot/should not be used, please make that clear to me and provide a nickname.
A signed release needs to be submitted anyway so we can prove we have permission to display your photo.
* Reason(s) will be written on the border around the photo. (Some reasons might be – too sick to make the trip, no one to accompany me, can’t afford the travel/hotel expenses, trying to finish school and have missed _____ days already, and so on.)
** A completed and signed release form must accompany each photo submitted (in part, so that the CFSAC will allow us to display the photo).        Request form (specify Word or OpenOffice pdf format) from SpeakUpAboutME at gmail dot com."
 So, those are two easy ways for you to help bring awareness to ME/CFS...from your couch or bed!

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