Next CFSAC Meeting

[Andrew]

When is the next CFSAC meeting, and how early would we have to sign up to speak via telephone. I am working on a presentation I want to make.

 

[justinreilly]

Last I checked they hadn't made an announcement about the date or anything else.

Val, on mecfsforums is organizing a protest. She is very busy with travel, but anyone going to the meeting, pls contact her about the protest!! All you would have to do is stand/sit there outside the building for about half an hour or less so we can record it and put it up on youtube. I have put up some money to help out with expenses.

Val's contact page:
http://www.mecfsforums.com/index.php?action=profile;u=308

Thread on this protest and funding for protests generally:
http://www.mecfsforums.com/index.php/topic,9120.0.html

 

[RivkaRivka]

i'm really beat, so i can't do much of anything. but in case this to do list is helpful to anyone, here it is. -- rivka


______

TO DO LIST FOR ME/CFS DEMOS
Written on Sept 12 2011, by Rivka
Email: Rivka (at) ThatTakesOvaries (dot) org

Reach out to local ME/CFS groups
a. Ask: will they join the demo?
b. Ask: if not, will they help us get the word out for the demo?

Reach out to have young people with ME/CFS to come to demo
a. To do this, contact SpeakUpAboutME@gmail.com, kickHeal, what other groups?
b. Contact local families with kids who have ME/CFS
c. Ask local ME/CFS groups if they know young people with ME/CFS

Find out what is needed for permits
a.Contact city police: ask what permits are needed for us to hold a demonstration with 5-25 people (or whatever you think it will be), in these locations:
- on the sidewalk in front of the target location (example: a federal site, like the Capitol Hill HHS headquarters)
- on the sidewalk across the street of the target location (across the street is likely not federal property)
- in front of the local federal building (example: Boston's federal building, the JFK building)

If demo is held at a regional gov't office
a. find out who runs that local HHS or CDC regional office, AND who is in charge of public relations there
- ask for a meeting with one or both
- have talking points and a letter ready to give them if you meet and even if you don't get to meet face to face
b. when you ask for a meeting, and/or once you secure a meeting, you need to decide in advance if you want to tell them about yr demo or not. There are pros and cons to telling them and pros and cons to not telling them until you are actually there.

Media outreach
a. Send press release via email, and also call all local newspapers and radio (ask rivka for sample press release). Pitch to health reporters, living reporters, city desks. Call the newspaper's main number and ask who covers those beats/sections, and who is the editor of each section. Pitch to both the reporter and her editor, separately.
b. Try to pitch to reporters live, or leave your live pitch on their voicemail. In other words, don't just rely on emailing yr pitch, but do email it, too.
c. Make sure you have a compelling story (example: "I've been bedridden and homebound 20 years with an illness that 1 million Americans have but that gets almost no funding for research." Or "We are a mother and daughter team protesting together in hopes to secure funding for the sick daughter who has been bedridden 10 years, along with almost 1 million other Americans."
d. Contact the reporters you want to reach 3 times. They are busy and I have sometimes gotten a yes on the 3rd try.
e. Consider a teleconference (this is when you have a press conference via phone; the press calls in to ask questions of a panel of patients, family members, expert doctors or whomever you decide to have present

Reach out to other groups to invite them to join us (this is a big task. Plus, be ready for rejection.)
a. ADA groups
b. HIV/AIDS
c. Autism groups

Prepare one pager
a. To give gov't official you meet with (or dont get to meet with, but you leave the letter/one pager at the front desk for them)
b. Same or similar one pager can be given to passers-by (for the public), the press, and for mailing to the HHS officials later.

Make homemade banners or signs with compelling messages
a. Rivka can send her 25 foot banner to the demo organizer, too

Accomodating disabled people
a. Consider doing what the London protesters did in 2010: organize vans to pick up folks from their homes and bring them to yr demo
b. Consider having folding chairs, wheelchairs, stretchers there for folks to sit and rest. Decide if this is a good or bad thing in terms of PR.

Consider media drawing tactics
a. Using the 25 foot banner
b. Die-in or lie-in (with pillows? Pajamas?) (be ready for risking arrest)
c. blocking doors (be ready for risking arrest)

Videotape and get on YouTube
a. Have at least two video cameras (flip cameras are great) and two camera people, in case one fails. Rivka has a flip camera that can be sent to the demo organizer to use and then return to Rivka.
b. Videotape the images and audio you want (like your prepared or spontaneous speech) twice, since audio or lighting or something will likely fail in one of them
c. Edit it to less than 5 minuts and put on youtube
d. Send a link to the video to gov't officials

 

[Andrew]

Okay. I really want to speak (via telephone) at the next CFS meeting. I don't want to miss the signup period because I don't know what's going on. Sometimes I miss announcements.