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Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

muffin

Senior Member
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CAlZY

Every single dollar helps us get closer to this critical goal. Thank you so much. I know that the Admins and the rest of the ME/CFS sick appreciate it. I do. Thanks again!!!
 

muffin

Senior Member
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CDC I forgot one of the major causes of under reported CFIDS sick

When I was first sick, I could do nothing. Literally nothing but sleep 22 hours a day. It was almost impossible for me to sit up at a computer and read or type. So for the first several years of a diagnosed CFIDS, I did not touch that computer except for a few minutes to see what Dr. Cheney had promoted as good meds and vitamins. That was it for me. I'm sure that others don't have the energy either to sit at a computer, go to support groups, hit the library, or really get up and out of the bed. Hence, no information and no way to get a diagnosis and treatment.

Being just too sick to get out of the house, get on a computer, get to a doctor, get to a support group, etc. is yet another major reason for underreporring of the real CFIDS/ME sick. They really are invisible and have no choice but to stay in their homes and beds. I know, I was there in that bed for 22 hours a day and a big day was making it down the stairs from the bedroom to the kitchen to eat Rye bread dipped in Olive Oil twice in one day. Odd food mix I know, but I must have needed the Olive Oil for some reason because that's all I craved and could eat.

It's those very sick, bedridden people who don't have others to help, protect and defend them that are not getting to a doctor for any sort of diagnosis and treatment. I think that if somehow we were to see those numbers it would be quite upsetting knowing that those poor folks are all alone living in their own personal hell. I could just explode with rage at the CDC for hurting those sick people, those without money/insurance, and to the young for the damage the CDC has done over the past 25 years.

Demean the disease, destroy funding and real research and ensure that the doctors and the public either don't know about this disease or think we are all lazy or crazy or both. Tina was dead on that CFIDS/ME people do get misdiagnosed with depression and then get put on the dangerous meds that make the situation far worse. The CDC's plan worked great - we really are invisible to everyone - for now. But it won't work any further after the studies are out and WPI and other orgs continue to do real research. Their ugly plan will backfire so badly on them once all the XMRV info is out and the CDC and other health orgs have been shown to be hiding a terrible disease and then a deadly retrovirus. Expect to see massive investigations, strangling oversight, and budget cuts to the likes of the CDC for this massive cover-up and the deadly consequences that have grown over the last 25 plus years.

So back to this campaign. This is the reason we must have major media attention. People don't know what ME/CFS is. They don't now that a new Retrovirus is out there and when the papers come back showing positive evidence on this probably deadly virus, they won't know about that either because the Federal health orgs are too terrified to let the public know what's going on. Damage control for those orgs while people are terribly sick and dying from this disease. Once the public finds out about THIS it's going to be one heck of a show. And I intend to sit back, make myself popcorn and watch the fireworks.

--- Please get to the campaign site and join and if possible, donate whatever you can. http://www.causes.com/causes/511536
 

muffin

Senior Member
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--- Please get to the campaign site and join and if possible, donate whatever you can. http://www.causes.com/causes/511536

I have heard others on other sites say much the same thing about this campaign so I know that these guys are doing the exact right thing at the exact right time. The spouse and I will be putting more money where our mouths are in the next two days. I'm pushing this not for me, but for the millions and millions worldwide that are sick or about to be sick and not getting what they so desperatly need and deserve. And again, I have the 9 year old niece showing many of the odd signs of CFS and FM (that does run in my family big time) that i had as a kid. She is hyper but has little stamina. Muscle pains at age 3 onwards. GI issues that are getting worse but there is no "stress" reasons for them and no diagnosis of the GI diseases (that too runs big time in my family). My 18 month old nephew is also in the front of my brain when it comes to CFIDS and XMRV and THEIR future. Especially when I am not there to help them down the path.

So, think about your kids, grandkids, nieces/nephews and other young ones and what hell lies ahead for them IF we do not seize the moment with this national (really international since big news gets picked up and spread all over the world) media campaign. http://www.causes.com/causes/511536
 

Mark

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This is going to be so brilliant, I've put it top of my sig, thanks tina, muffin, everyone.

Trust you'll explain how to donate to the cause in the ads themselves...help us get the word out, that sort of thing...
 

Frickly

Senior Member
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I have tremendous respect for Marly and know when she sets her mind on something she will get results! I hope everyone joins this campaign and donates what they can.
 
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Mark thank you.

Can't tell you how much it means to have you add it to your signature.

Also, we will be looking at other online resources.

When I spoke to the NYT ad salesman, he emphasized we need to include some information in the ad for people to know how to donate.

We have some experienced people working on this.

Got some other ideas for fund raising, if anyone is interested in helping. I am working two avenues outside the Internet. We have a poster here and Andrea Pring doing a bang up job.

Tina
 
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A small request for an ambasador of this project to do some first hand promotion of it over on our forum. The current avoidance of posting directly about it there is creating an atmosphere where the very active and intelligent community of PWME over there feel like people from this project are deliberately avoiding them. Since it is impossible to both ostracize and garner support at the same time, this seems to be a very critical moment for you all to reach out over there.

Mark has commented on the Project ENOUGH!!! thread that our two projects should cooperate as much as possible. I fully agree and have in fact proposed this both on the public thread and in PMs to muffin and Tina. In that spirit, would it be possible for you to please go over and start the conversation?

Thanks!
 
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boca raton, FL
Hi Muffin and the gang,
Great Idea.
I don't know where you are getting the funding, but i found this site regarding pricing on Washington Post Ad prices.

http://www.washingtonpostads.com/adsite/_res/files/managed/Financial2010.pdf

Good Luck raising the funding to pay for Ads. I think that IF the NIH and FDA studies are as positive as we hope, this could generat FRONT page stories, maybe even above the fold!
If it is negative and something like the CDC study that Reeves and company did on his way out, then it will be buried under the medical updates in section C or D.

But, just for grins, i looked up a site for costs of different siize ads in the Post. and i put the URL up just a few lines above this comment.
Best of luck to all of YOU!

TMH


Want attention, funding and real research? Major media campaign launched!

Go to the Facebook page: http://www.causes.com/causes/511536?m=f042604e

This major media campaign is a patient driven campaign with the support of multiple organizations. The campaign was started about a week ago to obtain members and funding quickly in order to get half and full page advertisements in the major newspapers and other media. Examples of the major newspapers include The Washington Post, which is read by every person in Washington DC including the President, VP, Congress people, investigative organizations, researchers, journalists, muck rakers, Federal employees (Those that work at the Social Security Administration and need ME/CFS background information to do their jobs) and millions of very bright, public policy people in and around the Washington DC metro area (which includes the Maryland and Virginia suburbs). This major media campaign will hit those very critical targets of people and organizations and GRAB their attention to get them informed and involved. I lived in the DC area and just about everyone reads the Washington Post.

The half page or full page advertisement is in the major development stages now with this group killing themselves to make this happen in a timely fashion. These people know that this HUGE message on ME/CFS and XMRV must come out shortly or we lose our most critical time window for greatest impact and effect. The advertisement will have logos/graphics donated by CFIDS professionals, and the ADS will be signed by the ME/CFS support groups and the online websites that support the ME/CFS people. All of these groups together on one page show a very powerful, credible, and united front - and this is important. All groups that sign will also have their website address posted, thus they too get more members and funding and will be able to get more people informed and involved.

I think that everyone can agree that this is a fantastic idea and one that MUST be done NOW. We all understand what our window of opportunity is and we all know we must take advantage of that open window before it closes on us again. So please, get to this Facebook page, become a member and give money. These good people need money for major newspaper ADS as they are costly but will have the greatest impact on informing everyone in the Washington DC area about ME/CFS and XMRV. Stating the facts with good, solid research will help to challenge and change how our health organizations fund, research, diagnose, and treat us. And it is way past time that this major challenge and change take place - wouldn't you say?

What will this media campaign get us? Major attention from all areas and players in Washington DC. Your Congress people and their staff read the Post. The media people read the Post. The public policy and watchdog groups read the Post. Doctors, researchers (esp. those in the Federal government and in the large bio-technology areas of both suburban Maryland and Virginia) read the Post. Lawyers and lobbyists read the Post. Everyone reads the Post to see what's in it for them and how they can grab information and use it. Happily, those that do internal investigations on Federal organizations read the Post.

We all used the Post for ideas, information (of course), and to find out what was really going on in the Federal government. The Post is great for breaking dirty stories that involve the Federal agencies, Congress, etc. That's their business. And this media AD will garner more attention on this entire situation that any other means that the CFIDS community has tried in the past - including lobbyists, marches, pleas to Congress via emails, etc.

The second major newspaper under consideration is the New York Times (NYT). The NYT is the Nation's newspaper. The NYT is read everywhere and can be found in the most remote and rural places in the US and abroad. The NYT spreads the information net on ME/CFS and XMRV research far and wide across the world. It hits all countries and does much the same in informing the public, public policy people, government types, and the researchers, doctors, and others who must diagnose and treat ME/CFS. NYT is the BIG NET.

Please, get to the Facebook page and become a member - get others to become members and give money to this incredibly critical project. THIS is how we all will get the attention, funding and research that we so badly need.

I am a huge supporter of this idea and believe that at this point in time this is the only thing that is going to work and bring the attention (massive amounts of attention) to ME/CFS, XMRV and the failure of our Federal health care organizations to deal with our disease and this newly discoverd Retrovirus. You all have read that XMRV is believed to be a possible cause for an aggressive form of prostate cancer. And you all probably believe that there is merit in the belief that XMRV may also cause other diseases (MS, Autism, other diseases) and cancers. There is also speculation that many millions of people worldwide are either infected with or are carriers of this virus. Now, wouldn't you like the government and policy people with the POWER and FUNDING to take note of these mind-blowing facts? I do. And so do over 600 other people. This Ad campaign has raised over $1,100.00 and has 624 members as of 9pm EST tonight. Those numbers are pretty incredible for a campaign that just started and especially given that we ME/CFS sick don't have the extra money to give to efforts that we don't believe will have an enormous bang for the buck.

http://www.causes.com/causes/511536?m=f042604e

Links for donating are set-up and other means for providing money to this project can be done if you prefer. If you would like to donate but not through Facebook, then please use the PayPal link through PANDORA's site http://www.pandoranet.info. This PayPal link will funnel money straight through to this campaign. The PANDORA site already has the infrastructure in place including the PayPal account. When using the PayPal account on the PANDORA site, please ensure that you put "Our Voice, Our Message, Our Lives" in the description. The PayPal button is at the top left of the PANDORA website. The hardworking folks are getting the Campaign's PayPal link up and running but until then, please use PANDORA's PayPal Link.

If you prefer to send checks instead of the above payment methods, contact the Administrators on the Facebook page and ask how to get your money to them. Should you have questions regarding this Campaign, contact the Admins. These folks are busy trying to get this ready to go, but they will respond.

Time is of the essence now - we ALL agree on that. Help these people move it out as quickly as possible to get the money to do a really bang-up job that gets a huge response from the readers of the Washington Post and New York Times newspapers. This really is going to be the biggest and far reaching bang for your buck/Euro there is. And it will generate far more research money than what we sick alone can do.

Finally, note that this media campaign is intended to be an on-going initiative. The major newspapers get hit first and then, with more donations, the other media outlets will be used. So, money, money, money is badly needed. The Admins of this group have been told by the Post that other advertisements like this one have gotten a great deal of media attention and interest. THIS intense attention and interest is what we need NOW. Thanks!!!


http://www.causes.com/causes/511536?m=f042604e
 
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I'm sure I have heard of someone taking out a one page add in the past. I think it was a revenge thing. I will see if I can find it. It may help with how you will design the ad.
 
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I think I will open another Facebook under a different name and join. I just got a full time contract at work and will have the extra money to be able to do so now. Muffin or anyonoe else, do you have any other good ideas on where else to donate money regarding XMRV? I plan on donating to Whittmore Peterson when I can, but I was thinking there are probably other places or other projects that need some financial funding also.
 

muffin

Senior Member
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Donate to this major campaign cause. THIS will get far more funding for WPI and the rest of the major research organizations than just giving a few dollars from us sick people. We need major media attention and this will do just that. It will get a ton of information out to those that don't know about CFIDS and XMRV and MUST know about this stuff in order to do their jobs - for us. This campaign will hit all the major and minor players in Washington DC. The President and VP and the rest of the senior policy makers really do read the Post. Everyone reads the Post. It's just what you do, every single morning or at night when you get home.
We will get a far bigger bang from this campaign than from any other advocacy attempt. We know those have not worked in the past. BUT, with the FDA/NIH studies coming out, THIS campaign WILL hit really hard and get super amounts of attention, funding and research. I think it will turn the tables on CFIDS/ME in great ways.

So, if you have any extra money I really would donate to http://www.causes.com/causes/511536?m=f042604e or, Links for donating are set-up and other means for providing money to this project can be done if you prefer. If you would like to donate but not through Facebook, then please use the PayPal link through PANDORA's site http://www.pandoranet.info. This PayPal link will funnel money straight through to this campaign. The PANDORA site already has the infrastructure in place including the PayPal account. When using the PayPal account on the PANDORA site, please ensure that you put "Our Voice, Our Message, Our Lives" in the description. The PayPal button is at the top left of the PANDORA website. The hardworking folks are getting the Campaign's PayPal link up and running but until then, please use PANDORA's PayPal Link.

If you prefer to send checks instead of the above payment methods, contact the Administrators on the Facebook page and ask how to get your money to them. Should you have questions regarding this Campaign, contact the Admins. These folks are busy trying to get this ready to go, but they will respond.
 

muffin

Senior Member
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15
I have tremendous respect for Marly and know when she sets her mind on something she will get results! I hope everyone joins this campaign and donates what they can.
You are correct! Everything that Marly gets involved with works and works great!! Marly, Tina and the other Admins have been doing an amazing job. I really believe this will get to the very important people in Washington DC (and the rest of the US/World via Internet, etc). We must inform the people in Washington DC on what is going on with CFIDS/ME and XMRV or they can not do their jobs for us..
DONATE!!!!! Everyone in Washington does read the Post. Everyone. The President and the rest of the super critical people read the post and those are the people who do the funding for the research for us.
 

Tuha

Senior Member
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muffin or someone else. i can try to post about this campaign on cfs facedbook pages - i have around 40 adresses of them. maybe we can get a small support from them. my english is not good so can you please write me a text about this campaign. maybe something not too long but really motivated and well described
 
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Here you are

Sorry for the delay. Yes, please post on your Facebook and ask others to join. If each donates $10, we will make real progress.

Here is a paragraph about it: 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 this illness.

Here is a link with more: http://www.causes.com/causes/511536/about?m=95c3dabb

And we have FAQ here: http://www.facebook.com/topic.php?a...g=41f162a2d7924873a62a8e6fc6270030&topic=1524

Tina