$10.00 donated, hope it helps.
Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!
- Thread starter muffin
- Start date
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
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
--- 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
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
http://apps.facebook.com/causes/posts/521920?m=ad6906d8
Tina has done a great job explaining everything you need to know about this initiative. People should also see the logos that are out there. Really good ones. Very powerful and eye catching ones, which is what we need.
Again, well done Tina, as usual!!!!
Tina has done a great job explaining everything you need to know about this initiative. People should also see the logos that are out there. Really good ones. Very powerful and eye catching ones, which is what we need.
Again, well done Tina, as usual!!!!
Can't take credit. It came from Marly, I just cleaned it up for clarity and being concise.
Tina
Tina
Some campaigns and organisations (inc PR perhaps) may wish to join WiserEarth directory? There are collaboration facilities built in that may be of interest, I believe.
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
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
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!
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!
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
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
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.
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.
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.
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.
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.
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
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
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
Shiso, thank you.
Tina
Tina