Archive for March, 2012

CFSAC Empty Chairs Project 2012

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.

 

 

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How can I help?

Mentor a young person

Mentor a young person by helping him/her craft their public comment. You can do this via email, phone, etc.

Spread the word

Post links to this site.  Spread the word via blogs, forums, groups, Facebook and other social media, etc.

Contact medical professionals

Medical professionals who have early onset patients should encourage and support participation of patients and families in Speak Up About ME.

Share media contacts

To help empower this project, please share your media contacts with us. The more media coverage of young ME/CFS patients participating in Speak Up About ME at the CFSAC and on Capitol Hill, the more public awareness of ME/CFS, and the more YANK on people’s heartstrings.

Please direct all media inquiries to SpeakUpAboutME at gmail dot com

 

 

There are many additional ways you can support Speak Up About ME.

Cheer us on

Spread the word about our event

Come to Washington and join us in Speaking Up About ME

Volunteer

Be a sponsor

Contribute time, expertise, services…

 

Please contact us with comments and questions.

 

 

 

What do I need to know about my public comment?


  • **** BE PREPARED TO REQUEST PUBLIC COMMENT TIME AS SOON AS IT IS ANNOUNCED ****

If you plan to submit public comment for the spring 2012 CFSAC meeting, notify us NOW at SpeakUpAboutME at gmail dot com so that we can add you to contact list and notify you as soon as we know about the announcement.

Slots fill up VERY fast – be prepared to put in your request immediately following the announcement (time slots will be long gone before the deadline) for a time slot for the spring 2012 CFSAC meeting.

Please let us know when you request a time (cc: SpeakUpAboutME at gmail dot com on your email requesting a time slot) and let us know as soon as you receive a time slot.

For more information, please see the CFSAC website.

  • Oral (in person, by phone or DVD) public comment provided at CFSAC can be no more than 5 minutes long. If your written public comment is longer than that, you may submit it and it will be entered into the public record, but oral public comment can be NO MORE than 5 minutes in length. (Suggestions – time yourself reading it aloud to someone, edit, and then time yourself again. Be concise.)

When you submit your public comment, send us a copy of your public comment so that we can compile public them.  Email it to SpeakUpAboutME at gmail dot com.

  • ME/CFS is a very isolating illness. Your public comment can include how many other young people you know with ME/CFS, how you have been treated by others (parents, schools, medical professionals, friends, etc.)
  • We can connect with you with a mentor to help you craft your public comment. Please let us know ASAP via email if you want to be connected with a mentor.

Support Speak Up About ME

SUPPORT Speak Up About ME

 

We gladly welcome mentors, volunteers, supporters, contributors.

We welcome your help!  SpeakUpAboutME at gmail dot com


Thank you for helping us Speak Up About ME!

We are working to make us all, Invisible No More!

UPCOMING EVENTS and ongoing projects

Speak Up About ME 2012, will take place at the next CFSAC (Chronic Fatigue Syndrome Advisory Committee) meeting (June 13/14, 2012).

When public comment registration opens, each person who wants to present public comment MUST email cfsac@hhs.gov  IMMEDIATELY to request time.

Requests should indicate that the participant is part of Speak Up About ME and would prefer a time slot during the same public comment time period as other Speak Up About ME participants.

 

 

Ongoing Projects:

 “Thank You for Remembering ME” Trading Cards are an ongoing project.

Contact us if you would like to have your “Thank You for Remembering ME” Trading Cards made. SpeakUpAboutME at gmail dot com

Early onset ME/CFS list

Speak Up About ME maintains a list of early onset ME/CFS.

If you came down with ME/CFS before age 23, contact speakupaboutme at gmail dot com.

Provide

name (let us know if we should only use your full name, first name only 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 Speak Up About ME to use this information as we see fit.   Example – showing the CDC, NIH, DHHS, CFSAC, media, etc. how many patients with early onset ME/CFS there are.)

Encourage others with early onset ME/CFS to be included on the list also.

 

 

The Speak Up About ME header and info about the Speak Up about ME website

Wondering why I use photos of two young men in the header, even though more women than men live with ME/CFS, and onset of ME/CFS is usually after age 30?

The easiest explanation is that these two young men are the patients I know the best.

They are the ones I live with.

They both have early onset ME/CFS, one having gotten sick at age 12 and the other at age 14.

(They are also the ones I can usually access of photos of.)

 

Speak Up About ME website

We fully intend to update the Speak Up About ME website.

ME/CFS however,  has put that on hold.

Everyone who knows about ME/CFS understands that ME/CFS (rather than the person living with it) decides when and how things can be done.

Our webmaster, a patient with ME/CFS, is struggling with worsened health, so is currently unable to update the website.

We have started this blog as a way of making information about Speak Up About ME’s events and work.