Frequently Asked Questions

 

Basic Facts

WHO? - Young People with ME/CFS and their families.

WHAT? - Speaking Up About ME – Invisible No More!

WHERE? - Washington DC, CFSAC meeting at Department of Health and Human Services.

WHY? - To raise awareness about ME/CFS, that it affects people of all ages, provide testimony to CFSAC committee, be Invisible No More!

WHEN? - Speak Up About ME will take place on MAY 11th, 2011!

 

More about the trip

Why should I participate? - Physical presence and reading your testimony in person at CFSAC has great impact. Providing your testimony via video also has great impact.

If these young people are so sick, why can they go to DC? – Advocacy – they don’t want anyone else to go through what they are going through and raising awareness will help ensure that no one else HAS to go through this.  This is a personal sacrifice and it make take weeks for them to return to their previous level of functioning.

What can I tell my school about the trip? - Attending CFSAC and meeting with Congressional representatives on Capitol Hill will be an integrated learning experience (advocacy, public speaking, science, geography, social studies).

How should I dress? - Wearing layers is recommended (your INVISIBLE NO MORE shirt will be worn on top of any other layers). The room where the meeting is held tends to be cold! Dress in a respectful manner. Many people with ME/CFS also have Multiple Chemical Sensitivities (MCS) – please be fragrance free.  Please order your shirt oversized so that you can wear it as your top layer.

 

What do I need to know about my testimony?

  • Speak Up About ME participants please ask for your time on May 11th!    
    **** SIGN UP NOW FOR PUBLIC COMMENT TIME TODAY ****

    • Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre-registered. Individuals who wish to address the Committee during the public comment session must pre-register by Monday, April 18, 2011, via e-mail to cfsac@hhs.gov. Time slots for public comment will be available on a first-come, first-served basis and will be limited to five minutes per speaker; no exceptions will be made. Individuals registering for public comment should submit a copy of their oral testimony in advance to cfsac@hhs.gov, prior to the close of business on Monday, April 18, 2011.
    • Slots fill up VERY fast – please put in your request TODAY (time slots will be long gone by April 18th) for a time slot on May 11, 2011.
    • Please let Denise know when you request a time (cc: Denise at speakupaboutme@gmail.com on your emal requesting a time slot).
    • For more information please see the CFSAC website.
  • As noted above, the testimony that you provide at CFSAC can be no more than 5 minutes long. If your testimony is longer than that, you may submit it and it will be entered into the public record, but testimony read aloud can be NO MORE than 5 minutes in length. (Suggestion - time yourself reading it aloud to someone and then time yourself again.)
  • When you submit your testimony, please send Denise a copy of your testimony so that we can compile everyone’s in a binder.  Please email it to SpeakUpAboutME@gmail.com.

  • ME/CFS is a very isolating illness. Your testimony 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 guide you through writing your testimony. Please let us know ASAP via the contact page or email if you want to be connected with a mentor.

 

What do I need to provide?

  • In order to schedule appointments with your congressional representatives, we need to know who will taking part in person by April 15th, 2011.
  • Your name, address, email address, phone info (also your cell # if you have one), parent/guardian contact info (names, address, email address, phone/cell phone # also).
  • Contact info: To reduce isolation and enable participants to keep in touch with each other, I will compile a list with contact info. Provide your name, snail mail address, email address, phone number.
  • FOR THE CARDS: All participants (regardless of age) must submit a signed media release form with their photo (for the cards). When you send me your photo ( 1MB jpg format)  and signed media release, you must also send me your name (as you want it to appear on the cards), your age, and how long you have had ME/CFS.
  • Accompanying adults must also sign and send media release forms for everyone in their party.
  • Your Speak Up About ME shirt.

Where do I order my T-shirt? - Your Speak Up About ME shirt can be ordered at the Zazzle store found here.

 

What should I bring?

  • All medications in sufficient quantity for the trip.
  • Money for incidentals.
  • PHOTO ID required for everyone over age 15.
  • Quiet activities (such as reading/homework/laptop, Ipod/MP3 player and headphones).
  • Snacks and drinks unless you can easily go to/from the cafeteria (located on the same floor the meeting is usually held on).  
  • Do NOT bring anything with peanuts (some of us have life-threatening peanut allergies – to the extent that even being around peanut products is a big risk).
  • Sunglasses or eyeshades if lights bother you. The room is lit with flourescent lights and there is extra lighting in the room because of the live streaming/videotaping.