Advocacy- Thinking Outside the Box

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This is such a great thread!

I think aboutr this kind of stuff all the time. It's nice to know others do too. Some great idea's here. Keep the creative juices flowing.


How about you get on good morning america with al roker and say something about cfs or whip out a flashy sign.

What about getting one of those big car window pens that people use to advertise a car for sale on the back window, we could all write on parked cars a catchy slogan about cfs.

-surfer
 

Nielk

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I like Beesknees idea of silicone bracelets.
They are very popular.

We can pick our own color to represent us - like for example red - representing blood which carries XMRV.
At the same time we can have stickers made for cars in red saying: carrying XMRV - beware.
 
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Remember when Greenpeace hung the enormous banner on the golden gate bridge? That got national coverage.

What about when animamal activists rented a billboard right in front of Oprah's main office imploring her to expose inhumane puppy mills in Pennsilvania. She ended up doing a whole show on the puppy mills.
 

Nielk

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Remember when Greenpeace hung the enormous banner on the golden gate bridge? That got national coverage.

What about when animamal activists rented a billboard right in front of Oprah's main office imploring her to expose inhumane puppy mills in Pennsilvania. She ended up doing a whole show on the puppy mills.
If we can get Oprah's attention....we can reach the whole world! People would "beg us" to to do studies on us...the money would come pouring in. Obama himself would convene his cabinet to see how best to resolve all our problems!
 
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NEIL, who said we should get oprah's attention? Not me. I was just Just giving examples on succesfull campaigns which took next to nothing in funds and created major awarenes.

No need to get sarcastic.
 

beesknees

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Oprah's a good idea. Years and years ago we had a letter writing campaign to Oprah about CFS to no avail. But it might be worth another try, especially now that she has a whole network with new shows looking for ideas. We just have to figure out what show's on the network to contact.
 

justinreilly

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The slogan t-shirts and signs i saw at at least a couple of recent CFSAC meetings are a really great bang for the buck, imo. brain fog- don't remember if i said that already in this thread- anyway i have something new to say so keep reading.
A suggestion for a t-shirt design:

Front:

KILL
BILL

REEVES'
CFS definition


Back:

Adopt a
Canadian

ME/CFS definition

with maybe some sort of funny graphic of a cute baby with a Canadian flag or something else.

A few years ago people wore "KILL BILL" t-shirts referencing the movie of the same name, for those who are wondering.

reactions?

I think we could get also get a great bang for the buck by giving out modest stipends (say $20-30 per day or whatever works) to pwME in the DC area who wear a slogan t-shirt and attend the CFSAC and senate and house appropriations committee meetings if open to the public and try to sit in the first row for the cameras; and/or meet with members of congress who are on these committees or their staffers in person.
 
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So many creative ideas! I think You Tube is a good idea-- you don't have to pay for it. And FUNNY is good. People like to watch funny videos.

What about sit-ins-- or more to the point-- LIE-INs? Imagine hundreds or thousands of people lying end-to-end on city sidewalks or around the Capital. Maybe a national ME/CFS lie-in day-- sort of civil-disobedience, I guess. (Yay! Back to the 70's ...)

And for any kind of ACTIVE protest of this nature, which obviously many of us would not have the energy for, why not get friends/family/volunteers to "stand in" for us. They could hold signs saying, for example, "I'm here for Emmanuelle Rosenthal who's too sick to be here" ... or something like that. (In runs and walkathons people will participate in place of or in honor of a relative who has the illness.) And then make sure we have video cameras rolling as well as contacting the press.

And while I understand the idea behind the blood donation idea, I know none of us would want to make anyone else sick ... even if it got attention.

Let's keep going on this. Great ideas!
 

Marty

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Some kind of protest at the CDC would really be a media event with big rewards. How about asking the AIDS group to carry signs for us, in sympathy for what they went through?
 

frenchtulip

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Medical School Curriculum

Medical schools need to include ME/CFS instruction in their curriculum, including the latest research findings--the link to XMRV and other physiological abnormalities in ME/CFS patients.

Dr. Kenneth Friedman outlined the steps needed to get ME/CFS included in the medical school curriculum at the CFSAC meeting in Oct. 2009. He stated that officials in medical education feel powerless to get ME/CFS instruction included in the medical school curriculum; that the CDC needs to make ME/CFS a reportable illness; then the National Board of Medical Examiners would include questions about ME/CFS on the National Boards; and medical schools would be forced to include ME/CFS in their curriculum.

http://www.hhs.gov/advcomcfs/meetings/presentations/kennethfriedman.pdf

Until we get the CDC to make ME/CFS a reportable illness, I wonder if it would be helpful to contact medical centers at state universities to see if they offer instruction on our illness and if so, does it focus on psychological or physiological aspects. As a tax-paying citizen of my state, I think I should have the right to find out this information. If nothing is being offered or it is a strictly psychological approach, I might ask if there is something I could do to get good information to students. I have considered doing this for some time. Perhaps I will do it on May 12th.
 
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I generally don't post because of limited energy and brain power. I have been working with the MCWPA since I met Tina at the NJSFA conference in Oct and Marly at the CFSAC in October. My family is like the whose who of NEI. I personally tested neg to a XMRV culture, but am awaiting to be called back for serology. I'm told it is likely to be another 8 months before I get results back. Meanwhile, I have a younger brother, who has recently finished chemo and radiation after finding squamas (sp?) in his lymph. My step father is battling lung cancer. My Dad had a myeloproliferative (sp?) disorder and prostate cancer. My Mom, daughter and niece have fibro. My son has severe ADHD...and the list goes on.

I am thrilled to see this thread going on the forum! I have been working with Muffin to come up with more advocacy efforts that also raise funds for the press release. We plan on taking the next positive XMRV study and getting it out to the public with the same fervor as was done with the WP ad.

We will be launching the zazzle store shortly (www.zazzle.com/mcwpastore). Please take a look at it and let us know if there are any additional slogans you'd like to see on tees and other items. We have cafepress out there now (www.cafepress.com/mcwpa), but zazzle will allow us to easily add slogans to merchandise.

I have looked into silicon wrist-lets, but need a way to distribute them. I was going to buy 100 myself and pass them out myself. I was thinking of blue, but perhaps red is an idea. I wonder if people might confuse red with AIDS though. If we had a few volunteers to do mailing, I could order them and have them shipped out directly to volunteers. We already have google form to collect addresses that Lynn made. What do you all think?

Here are the results of the last patient survey, and therefor the order of priorities:
Send press release announcing next big biological finding in ME/CFS- 67%
Public service announcements to be aired on T.V. and airports- 50%
Support "Doctors Need to Know" information campaign- 49%
Design a print ad and give coop money for orgs to run May 12- 35%
Send letters to patient organizations of other illnesses associated with retrovirus- 35%

Tom Hennessey had a great idea to get a college glee club in the DC area and do a flash mob kind of thing at a DC mall to raise awareness. I love the idea, but we would need some volunteers to make an effort like that to happen. My point is that there are terrific ideas out there, let's keep them coming!

Karen
 

Nielk

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NEIL, who said we should get oprah's attention? Not me. I was just Just giving examples on succesfull campaigns which took next to nothing in funds and created major awarenes.

No need to get sarcastic.
CFIDSURFER,

I didn't mean to hurt your feelings!!!!!!!!!!!
I was just trying to be funny.
Nothing to do with you.
You just mentioned Oprah's name and I just went a little wild with it out of frustration.

Sorry,:hug:

Nielk
 

Nielk

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I have looked into silicon wrist-lets, but need a way to distribute them. I was going to buy 100 myself and pass them out myself. I was thinking of blue, but perhaps red is an idea. I wonder if people might confuse red with AIDS though. If we had a few volunteers to do mailing, I could order them and have them shipped out directly to volunteers. We already have google form to collect addresses that Lynn made. What do you all think?

I know that I mentioned the color red because of blood but later learned that It's the color for heart disease illnesses.
How about translucent color like colorless plastic - because we are the "Invisible Disease"?
 

justinreilly

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I once thought about a symbol. Off the top of my head something like:

View attachment 4891

that catches the eye and is easy to, dare I say, graffitti?

The anti-nuclear campaign had their symbol which became well known. With so many people in each country with MECFS, if we can communicate, we should be able to get this image everywhere. Posters, flyers, graffitti etc. We should encourage all MECFS blogs and websites to dispay it. Obviously there'd also be a more professional version for that purpose!

Mark

p.s. I really like the virus/mouse idea standing in line at blood donation centres
I like this, as you can tell. i think it's good as it is. I think the mouse idea was very inventive. i still like my idea of the virus though because it's scarier and it really creates the visual of the virus getting into the blood bank.

I like this woman's spirit: http://www.youtube.com/watch?v=1DSzTCYPAvs&feature=mfu_in_order&list=UL
 

justinreilly

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I know that I mentioned the color red because of blood but later learned that It's the color for heart disease illnesses.
How about translucent color like colorless plastic - because we are the "Invisible Disease"?
Blue is our ribbon color so that would work. translucent is good too for invisibility.
 

cigana

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Another idea is to make more use of the "pyramid scheme" idea. As far as I understand it, these things only work because you have to convince someone else (or ideally more than one other person) to get invlolved too - that is how the thing grows exponentially.

We should try to incorporate that into our campaigns - i.e. do X and tell other people to do X too. That will make a campaign much more effective in principle.
 
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CIGANA-- would love to see your XMRV symbol on t-shirts and bumper stickers. Could someone get the symbol to zazzle of Cafe Press? Not sure how that works ... Maybe with Justin's "silence= living death" underneath? very powerful....