ME/CFS Awareness Campaign Please Join!

[Frickly]

To: Members in XMRV Global Action

Our Voice, Our Message, Our Lives (ME/CFS Awareness Campaign) Please Join!

Marly Silverman of P.A.N.D.O.R.A. has just created a new cause in order to create a, much needed, patient-driven advertisement campaign on ME, CFS, Disability and quality of life issues, XMRV and other related issues.

Marly Silverman states that the purpose of this initiative is to "Create an effective, cutting-edge advertisement campaign specifically to address the lack of quality of life of individuals with CFS, also known as Myalgic Encephalomyelitis (ME).

Through this multi-organization campaign, we will address quality of life issues such as obstacles to medical care for individuals with CFS, also known as Myalgic Encephalomeylitis. Ads will be strategically placed in national newspapers, in community newspapers, blogs, websites and will address pertinent issues with government agencies.

Other goals will be to create public service announcements that reflect the patients' voice; to win the hearts and to raise the public consciousness to the plight of individuals with NeuroEndocrineImmune disorders. The final goal is to issue a collective, unified and powerful statement that an entire community will no longer be silent and invisible. The cause will enhance the national grass-roots mobilization required to speak up on the lack of quality of life for individuals with CFS, also known as myalgic encephalomyelitis."

Please join your voice with Marly to create a powerful message that will no longer be ignored. http://www.causes.com/causes/511536?m=b15ffdf1

Thanks Marly!

 

[Dreambirdie]

This is a great idea. And here's one place we need to bring some awareness:
http://www.forums.aboutmecfs.org/showthread.php?6676-Easy-Solution-to-Treat-CFS-Dr.-Oz/page2

Please write Dr Oz and GMA to let them know that DRINKING GREEN TEA SWEETENED WITH D-RIBOSE (Dr Oz's suggestion) will not cure CFS.

 

[Frickly]

I know! That is just ridiculous. ;( When I used to take D Ribose I took two tablespoons three times per day. That would be some mighty sweet tea. Notice I am still here and not "cured".

 

[*GG*]

Already a member.

 

[Hope123]

The Ad Council is a group of professional ad firms that donates services for charities in the US. Most of the PSAs you see in the media are by the Ad Council.

I don't think PANDORA fits the guidelines but here is the site for info:

http://www.adcouncil.org/default.aspx?id=319

 

[usedtobeperkytina]

Thank you Hope, I will look into it.

Thank you for posting this here, also.

We need money. Thankfully it is growing. This is patient-driven. The idea is for you, the patient, to have your say. But we are receiving some advice from advertising folks to make sure it is effective. (What good is it for patients to have their say if it isn't presented in a way that the public will notice it?)

Also, we are hoping to capitalize on the upcoming publication of the NIH study. That is when we will or can get the attention of the public.

We need everyone to ask everyone to donate, even if it is just a few dollars. Patients successfully made it so PANDORA to win in the Chase competition. Now, we can do this, which will produce something very tangible.

I also want to emphasize that while Marly and Me (is that copyrighted?) are facilitating this, it is multiple organizations and patients on their own.

Tina

 

[Frickly]

Thank You!

I hope everyone donates something. Even five dollars would really add up!

 

[usedtobeperkytina]

We have just posted sample logos. We would love to hear your opinion.

Tina

 

[Hope123]

I have a suggestion for the name (although you're probably not looking for a name!) but how about: One voice, One message, One million lives? The million refers to the lower number for people ill with ME/CFS in the US. It also plays into the alliteration but with a twist.

(My former classmates' relative, now passed away, was in advertising and created the Peace Corps "The Toughest Job You'll Ever Love" campaign.)

Also, is there a way to join or donate without using that site? I don't like to join sites that extract too much information from me as the "allow" button seems to indicate when you click to join?

 

[Tuha]

Also, is there a way to join or donate without using that site? I don't like to join sites that extract too much information from me as the "allow" button seems to indicate when you click to join?

i have also often this problem - if there is no possibility to join or donate without using that site then I have 2 facebook account - one for my friends and one we can say fake account with fictiv name, another email adress,...so I dont have to share informations from me with everyone

 

[usedtobeperkytina]

That is a consideration. We are getting requests for donating without going through the site. One reason this method was chosen is that it is completely transparent. You see how much is donated. You see what the money will go to. It is also very interactive.

But, the topic has come up as others have made this request. If we figure something out that will ensure the appropriate use of funds as well as protect those handling the funds from claims of using the money for something else, we will let you know. Again, the transparency of the money raise, and from whom, provides some protections. Sometimes, banks set up funds, where they handle it. But that would still involve trust that the person or organization handling the money is using it appropriately and honest in the status of the account.

But I will let you know if we figure something out.

Tina

 

[Tuha]

That is a consideration. We are getting requests for donating without going through the site. One reason this method was chosen is that it is completely transparent. You see how much is donated. You see what the money will go to. It is also very interactive.

But, the topic has come up as others have made this request. If we figure something out that will ensure the appropriate use of funds as well as protect those handling the funds from claims of using the money for something else, we will let you know. Again, the transparency of the money raise, and from whom, provides some protections. Sometimes, banks set up funds, where they handle it. But that would still involve trust that the person or organization handling the money is using it appropriately and honest in the status of the account.

But I will let you know if we figure something out.

Tina

its great that it seems transparent. What is my experience - a lot of people will never make their facebook account because of more reasons. if the campaign and donation is only throught facebook site - you lose many voices, donations. I think its always better to do normal web site or both. This is my experience after speaking to quit a lot of people who dont like facebook and I am not too optimistic that they will change their opinion soon.

 

[Hope123]

Can PANDORA put this on their website? It's not so much tranparency about how funds will be spent that is concerning right now (although that is a concern long run) but more about signing on.

 

[usedtobeperkytina]

we're discussing options.

I will let you know.

For those willing to use Facebook, please donate, even if it is a little. We were rocking along really good, then nothing today. We are hoping to have enough for at least a 1/4 page ad in NYTimes. The time to contribute for that is now, so when big XMRV news comes, any day now, we will be ready to capitalize on it.

Tina

 

[*GG*]

its great that it seems transparent. What is my experience - a lot of people will never make their facebook account because of more reasons. if the campaign and donation is only throught facebook site - you lose many voices, donations. I think its always better to do normal web site or both. This is my experience after speaking to quit a lot of people who dont like facebook and I am not too optimistic that they will change their opinion soon.

I would agree with Tuha on this. and this is a good idea: "I think its always better to do normal web site or both."

 

[usedtobeperkytina]

We're working on separate website. Be patient, and help us, if you want. We're thinking of a blog style website, as long as we can also post reference documents for media inquiries. That would be cheapest.

By popular demand, PANDORA said they will accept mailed donations and donations through their website for this project, just mark it as for this project. Go here: https://www.paypal.com/us/cgi-bin/w...737ba21b081983b975b35e10fe14f76758e707b997bca

Be sure and say it is for the" CFS/ME Patient AD Campaign" in the description. While it would be great to create a separate place to donate, for tax deduction purposes, it needs to be administered by a 501c3.

We also urge other patient organizations to do the same. Each one can raise funds for the campaign, so people can donate to them and when we get ready to run the ad, we will collect the money and get as big an ad as can be afforded.

We're planning on the New York Times.

Also, I have been working with the group there deciding on a logo. We are almost finished. Feel free to join and vote for your favorite. http://www.causes.com/causes/511536?m=b15ffdf1

Tina

 

[*GG*]

Are you sure the Paypal link is correct?

 

[Hope123]

It would be nice if there is a counter on the website to register number of ?unique visits; some sites also have cookies so they can detect where people are coming from. I'm not a computer person so I don't know how this would work technically but knowing who is interested (from what states, ages, regular person vs. journalist vs. scientist vs. politican office, etc.) would help. Some sites now ask for some minimal info before allowing access but it might be too burdensome and decrease number of viewers.

It might be interesting to place links to both the Primetime Live older interview and the old Nightline interview on the site (Forbin on this site is working on putting the latter online) to show that this is not a new illness but one that has been around for a long time and not thorougly investigated. As you are probably contemplating, some mention of asymptomatic folks with XMRV might be included; sure people with CFS might not donate blood, date, etc. because they're too sick but these asymptomatic folks do. A section about epidemics would also be news; this stuff isn't mentioned in medical training. But these points will have to be discussed in a somewhat even-handed way as this might get what you want across without us seeming like raving/ ranting patients. It depends on what message you want out in the public.

 

[muffin]

See site for much more info - bumping to the top

http://brc4mecfs.blogspot.com/2010/07/its-time-for-mecfs-to-have-its-own-pr.html


It's time for ME/CFS to have its own PR Machine
I think we should be doing more. We should be suspicious of the power of the CDC PR machine.

I think a fund should be started to take out a full page ad in the Washington Post with a letter to the American Public from ME/CFS patients telling them that their government is supressing information which confirms a link from XMRV to ME/CFS. I think the letter should be written concisely without emotion. Several paragraphs, just enough to explain what is going on. Every advocacy organization who wants to be a part should sign on to that letter, and start pushing towards funding that ad. It should be stipulated that if the paper is published before funding for the ad is complete, that the letter should slightly change to inform joe and jane public of that association. This is not 1993, and with the power of the internet, together with funding a well written letter as a full page ad in the right paper we could blow the lid off of this.


We do not have the energy or mobility like ACT up for demonstrations. Our advocacy organizations need to start acting together, staying on message, and co-ordinating their message to the public.


Monroe's comment to the NY Times was an insult. We are not well organized. If we were, a full page ad detailing this entire scandal would have run in the Washington Post, the NY Times, and the Wall Street Journal on July 6th. American Joe and Jane public would have been spitting out their java at reading there's a new retrovirus in town.

But that didn't happen.


One organization needs to step forward to set up a PR fund and the heads of all advocacy organizations for ME/CFS need to co-ordinate to fund it and run it.
It needed to happen 20 years ago, but yesterday will do.


At the end of the day, even with all the research in the world, this is still a Public Relations fight. It's time we fought it.


Time for the leadership to step forward. Time for patients and their carers to put their money into PR. This chance may never come again.


Andrea Martell
Founder
http://BlueRibbonCampaignForME.org
Email This BlogThis! Share to Twitter Share to Facebook Share to Google Buzz 2 comments:
vw said...
Hi Andrea

You are so right girl, without a shadow of a doubt we need to be very suspicious of the power of the CDC and not be getting lulled into any false sense of security at statement of paper being released. I dont know where the money will come from to run this but perhaps we could all donate to run an ad. I know i would be willing to donate to this. Excellent post and i pray that ur words will get the action they deserve.
Lots of love xxx

July 15, 2010 6:19 AM
Jo said...
I couldn't agree more, Andrea. I suspect, going on history, that even with the publication of the NIH/FDA study, that the long, hard struggle for proper recognition and more biomedical research will not be over and there will be a long way to go yet. There is also the matter of those who us who may not test positive for XMRV and the discimination, neglect and medical abuse they are likely to continue to suffer, simply because no explanation for their symptoms has yet been found, so I believe that the need for a PR organisation, such as you suggest will be ongoing for a good few years yet. Let us know if you are able to take this further and what we can do to help. Many thanks.

July 26, 2010 1:33 PM

 

[Hope123]

I was trying to find out what this type of advertising is called: it falls under "advocacy advertising." googling the term leads to interesting articles. I've recently found that the Values.com ads are posted all over in ads/ bus stops/ etc. where I live.

Some thoughts:
- it might be too cumbersome/ more expensive but ads which denote people or a group of people from different background and ages might be good also; after all, there are people with CFS of different ethnicities and there are influential people of different ethnicities

- is the message generally educational and if so, what do we want people to know or what action to take?

- another paper to consider advertising in is Roll Call, which is delivered free everyday to all US Congressional members and White House staff

http://en.wikipedia.org/wiki/Roll_Call