ME Demonstrations Scheduled for S.F. on 12/9/2013 and Washington D.C. on 12/10/2013

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Wally

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Hi! Everyone. Really moved by all the support and encouragement I have been getting for these demonstrations. The outpouring from Europe and other places around the globe has been so touching. I feel very privileged to be able to be a voice for any patient who would like me to make a stand for them at these demonstrations.

I would also love to hear from anyone who might be considering coming out for either the demonstration in S.F. or Washington D.C. I will be sure that we have an opportunity to get something warm to drink and eat and have an opportunity to find a quiet corner to rest and swap stories.

For those who have been offering to help with any of the preparations for the demonstration, I would welcome any suggestions you may have for wording on signs/banners, leaflets and/or media resource packets. So many terrific things have been written by others that do an excellent job of articulating concerns with the IOM/HHS contract and the lack of funding for this illness. It would be great if I could receive suggestions on what sources I could use for each of these items or perhaps you have some great ideas of your own.

I will be working feverishly all weekend and next week (of course all of this will be done in between many naps) to get all of my ducks in a row by next Friday, so I can spend next weekend resting up for a very busy Dec. 9th and 10th.

Take care and I really do appreciate all the posts here on the Forums, as well as the private e-mails I have been receiving. Power to the Canaries!!!

Ember - I love this picture. Definitely how I have being feeling the last couple of days!
4338735946_d4b2f7c4a8_b.jpg


Susan (Wally)
 
Seven7

Seven7

Seven
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@Wally I know there are people who's job is to organize demonstrations (the peaceful people ones), why not give them a ring and see what can be done to add to the cause.
 
W

Wally

Senior Member
Messages
1,167
lnester7 said:
@Wally I know there are people who's job is to organize demonstrations (the peaceful people ones), why not give them a ring and see what can be done to add to the cause.
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Please send me a private e-mail at wallacealvincleaver@gmail.com with the name and contact information for these "people" and I will make contact with them to see if they would be interested in helping with these or future demonstrations.

Also if anyone has contact information for any other groups that you think might like to lend their support for either of these demonstrations, I would be happy :) to receive this information as well.

Wally (Susan)
 
Andrew

Andrew

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I made this graphic a long time ago. Maybe someone can do one like it that says ME/CFS instead. I was going to make it into bumper stickers. I also have this as a Corel Draw file, a Photoshop file, and a TIFF. The Corel Draw file would be the logical place to change this. Unfortunately, I'm not up to doing this now.
 

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RivkaRivka

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368
the organizer of these upcoming demos, wally/susan, came to the original HHS demo we did in San Fran a few years back. see video link below. she is a wonderful and smart person.

Video:
(6 min: Demo at Health and Human Services in San Fran, CA. ME/CFS patients from S.F.)

Description of San Fran HHS protest found here:
http://twenty-years-and-counting.blogspot.com/2011/05/mecfs-demo-in-san-francisco-success.html

if anyone is in the wash dc or san fran area, i hope you go to these demos that wally/susan is organizing!

MAKE A DIFFERENCE! TAKE A STAND!

-- rivka
 
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readyforlife

Senior Member
Messages
137
I really wish that I lived closer. I'd drag my carcass out for this event. Does anyone know how many people are going to join Susan or is she all alone?
 
W

Wally

Senior Member
Messages
1,167
readyforlife said:
I really wish that I lived closer. I'd drag my carcass out for this event. Does anyone know how many people are going to join Susan or is she all alone?
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Wally definitely needs participants especially in Washington!!! All the work has been done for you. Just show up and join in the adventure. I will even buy the coffee and lunch for anyone finding a way to join me in these activities. :)

Hello! Washington DC patients, family members, friends, neighbors, supporters or any interested parties, please stop by one of these demonstrations to support a fellow patient (Wally) and patients worldwide who are physically unable to attend any MECFS event outside of the confines of their bed or home. Make someone's holiday season joyful by showing that people do care about them and even one person can make a difference in advocating for this illness. Please join me in being a small ripple in the pond. If we dream big enough and come together as a community we can find ways to create a giant wave forward to carry us on to new beginnings.

Contact me at WallaceAlvinCleaver@gmail.com (Wally's Virtual World) for more information on how you can be part of these demonstrations.

Don't forget to sign the petition regarding the HHS/IOM contract. The petition goes to print tomorrow and we want to include you in MECFS history in making this grassroots advocacy action take flight.

Wally (Susan Kreutzer)
 
Nielk

Nielk

Senior Member
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6,970
Llewllyn King wrote about the demonstration - David & Goliath
http://www.lasvegassun.com/news/2013/dec/05/llewellyn-king-hns/

If he wants to observe a classic David-versus-Goliath rumble, Gladwell might want to go to Washington on Tuesday — Dec. 10. He will see a frail woman go up against the federal government with a humble petition and a small following of mostly very sick people.

Her name is Susan Kreutzer and she suffers from the debilitating and mysterious disease Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis, which is the name that patients favor.
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aimossy

aimossy

Senior Member
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1,106
I cant figure out the time differences.

GOOD LUCK SUSAN! and to everyone that goes and supports you I will be thinking of you down here!
XXOO
 
W

Wally

Senior Member
Messages
1,167
SF Demonstrators - see you tomorrow at the HHS Federal Building. Demonstration starts at 10:00 am, but I will be in the coffee shop/cafe next to the building at 9:30 (facing the bldg. it will be on the left). Look for someone in a bright canary yellow T-shirt. E-mail me at WallaceAlvinCleaver@gmail.com if you have any other questions.

Rest up canaries we are going to try to take flight tomorrow and let the world know we are not invisible and we do have voices that need to be heard!!!!

HHS
90 Seventh Street
Federal Building, Suite 5-100
San Francisco, CA 94103
Phone: (415) 437-8500
Fax: (415) 437-8505

Feel free to post this information on other online locations.

Wally
 
Sing

Sing

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1,784
Location
New England
Thank you, Demonstrators! I was just out in San Francisco visiting my son and his family. I would be with you--though it is hard for me to stand--The thing to do in that case might be just to sit on the sidewalk with a sign indicating Neurally Mediated Hypotension, or Autonomic Dysfunction, as one of the common symptoms in ME.
Anyway, it is good to try to have a public voice. This is empowering for us!
 
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