You can view the page at http://www.forums.aboutmecfs.org/content.php?227-A-Time-To-Act
Article: A Time To Act!
- Thread starter Phoenix Rising Team
- Start date
I'd better get royalties if my suggestion's used (it suddenly looks far less well phrased to me though!).
Also, I don't know what sort of people that Patient Alliance have access too, but I know a couple of people who worked in fairly senior marketing positions, and I expect would be willing to give advice if needed.
Also, I don't know what sort of people that Patient Alliance have access too, but I know a couple of people who worked in fairly senior marketing positions, and I expect would be willing to give advice if needed.
At this point Cort, I believe this Initiative is the only thing we can do to get real funding quickly for our private and public research efforts. As you all saw, the XMRV Conference did not deal with funding issues. The governent is going to continue to be ultra conservative and move at a snail's pace. We can't have that pace anymore. We have had 25 plus years of no movement and no action except that which came from the private research organizations. We see the pattern - we have seen the pattern for 25 years.
WE must be the ones to push. We must be the ones to bring the pressure on the government to get real funding out quickly and not in the next several years, if at all.
As Cort has suggested, please spread this message out to everyone you know, to all other websites, blogs, and even articles written about CFS/ME/FM and Retrovirus research. The more we get this message out (along with the link http://www.causes.com/causes/511536 the faster our membership grows and the more donations we get in to get our messages out to the public.
A very smart person noted that this Campaign is akin to that of the HIV/AIDS advocacy groups. They too had to fight for themselves to get attention and real funding since there was so much bias against them as well. Many of us believe that this initiative will serve that purpose of really starting the fire that gets us the major funding and attention we must have, in much the same way as the HIV/AIDS sick and advocates did. HIV/AIDS has had billions spent on their disease (which is great), but now it is our time and we too will spread our messages out far and wide and get the attention, funding and research we must have NOW.
This campaign is NOT a one-shot deal. This is an ongoing initiative to hit every form of media out there so that the public is made very aware of the situations regarding CFS/ME and the possible terrible affects of the newly discovered Retrovirus family, as found by WPI/CC/NCI and NIH/Harvard - the heavy hitters in the research world. The immense credibility of these research organizations only helps US in getting the messages out that the public will believe and trust. And it will be the public that brings the enormous pressure on the Federal, State and even local governments to deal with this disease and this Retrovirus family. Like the HIV/AIDS advocates, we must have public pressure to get the job done. And that's why this is an ongoing patient-driven initiative.
Please get involved. Hit the link and shortly the website and give us YOUR ideas. Even though this project is run by CFS sick people it is an amazingly well run organization with every effort made to include all of us sick people. No other group has gone the patient-driven route - it really is quite hard to get hundreds of people involved, listen to their ideas, and put everything out for a vote. But the people behind this project are making it happen and involving the almost 1,000 members in all decisions.
As the insighful people like Cort understand, THIS campaign is what must be done NOW.
Thank you Cort. Thank you to everyone who has joined, participated, and/or donated.
WE must be the ones to push. We must be the ones to bring the pressure on the government to get real funding out quickly and not in the next several years, if at all.
As Cort has suggested, please spread this message out to everyone you know, to all other websites, blogs, and even articles written about CFS/ME/FM and Retrovirus research. The more we get this message out (along with the link http://www.causes.com/causes/511536 the faster our membership grows and the more donations we get in to get our messages out to the public.
A very smart person noted that this Campaign is akin to that of the HIV/AIDS advocacy groups. They too had to fight for themselves to get attention and real funding since there was so much bias against them as well. Many of us believe that this initiative will serve that purpose of really starting the fire that gets us the major funding and attention we must have, in much the same way as the HIV/AIDS sick and advocates did. HIV/AIDS has had billions spent on their disease (which is great), but now it is our time and we too will spread our messages out far and wide and get the attention, funding and research we must have NOW.
This campaign is NOT a one-shot deal. This is an ongoing initiative to hit every form of media out there so that the public is made very aware of the situations regarding CFS/ME and the possible terrible affects of the newly discovered Retrovirus family, as found by WPI/CC/NCI and NIH/Harvard - the heavy hitters in the research world. The immense credibility of these research organizations only helps US in getting the messages out that the public will believe and trust. And it will be the public that brings the enormous pressure on the Federal, State and even local governments to deal with this disease and this Retrovirus family. Like the HIV/AIDS advocates, we must have public pressure to get the job done. And that's why this is an ongoing patient-driven initiative.
Please get involved. Hit the link and shortly the website and give us YOUR ideas. Even though this project is run by CFS sick people it is an amazingly well run organization with every effort made to include all of us sick people. No other group has gone the patient-driven route - it really is quite hard to get hundreds of people involved, listen to their ideas, and put everything out for a vote. But the people behind this project are making it happen and involving the almost 1,000 members in all decisions.
As the insighful people like Cort understand, THIS campaign is what must be done NOW.
Thank you Cort. Thank you to everyone who has joined, participated, and/or donated.
Hi Esther,
I have been doing a little of the work behind the scenes. I can tell you that we would love to have more professional marketing advice. Tina is the one that is coordinating everything. Could you drop her a private email to talk about how to get those people enrolled?
Thanks,
Lynn
Esther12: The Team is comprised of very talented people in all areas including legal, journalism, public relations, research and fact checking, website development, graphics, photography, government relations, advocacy, and those with medical/scientific backgrounds (as Tina has already spoken of). BUT, like any grass roots organization we can always use more people to help.
So, if you or people you know want to participate in this project, then PLEASE DO! Go to the link, read the DISCUSSION page, add your ideas, comments and if you can help in any way possible, contact the Administrators and they will steer you towards the right groups.
Right now we need people to help with Fundraising. We would love to have people with experience in fundraising but experiene is not required. Fundraising also involves getting the word out across the Internet into other websites, blogs, and articles. Fundraising means awareness - and that means sending your local TV and newspapers information on this Campaign. Tell your own story, add the link to this campaign, and you may be surprised when the reporter emails or calls you for more information. If you would prefer not to deal with those questions, simply contact Marly or Tina or the Admins on the Causes page and the Spokespeople will take over.
Fundraising is not just begging for money. It also involves getting the message out to every media outlet there is. Fundraising involved awareness of what we all are trying to accomplish and the major issues that we and the researchers, doctors, others are dealing with.
So speak up! Bring in your friends who have interest and would like to help. The more people thinking, the better the product!
So, if you or people you know want to participate in this project, then PLEASE DO! Go to the link, read the DISCUSSION page, add your ideas, comments and if you can help in any way possible, contact the Administrators and they will steer you towards the right groups.
Right now we need people to help with Fundraising. We would love to have people with experience in fundraising but experiene is not required. Fundraising also involves getting the word out across the Internet into other websites, blogs, and articles. Fundraising means awareness - and that means sending your local TV and newspapers information on this Campaign. Tell your own story, add the link to this campaign, and you may be surprised when the reporter emails or calls you for more information. If you would prefer not to deal with those questions, simply contact Marly or Tina or the Admins on the Causes page and the Spokespeople will take over.
Fundraising is not just begging for money. It also involves getting the message out to every media outlet there is. Fundraising involved awareness of what we all are trying to accomplish and the major issues that we and the researchers, doctors, others are dealing with.
So speak up! Bring in your friends who have interest and would like to help. The more people thinking, the better the product!
For people who wish to donate to the media campaign using PayPal, go to the PANDORA website
http://www.pandoranet.info/
On the left side is a box for donating via PayPal. When donating just note that the donation is for the "ME/CFS Worldwide Patient Alliance" so that the money goes straight through to this media campaign.
This is our time. This is our chance. Donate now. Spread the word.
I sent a little PM to tina (hopefully the right one).
I'm not a facebook memeber, and always end up getting lost arround there, so wasn't quite sure what was going on. I'm very slowly working on something else at the moment, so don't think I'll have much to contribute to this campaign anyway, but certainly hope it all goes well. I think Cort is right that we should be leveraging XMRV in a way that could help us even if XMRV falls through.
I'm not a facebook memeber, and always end up getting lost arround there, so wasn't quite sure what was going on. I'm very slowly working on something else at the moment, so don't think I'll have much to contribute to this campaign anyway, but certainly hope it all goes well. I think Cort is right that we should be leveraging XMRV in a way that could help us even if XMRV falls through.
Cort is defianatly right about this, i can see the sense in those wise words, Especially if XMRV turned out to be a innocent bystander in this illness, which i personally think might be the real danger. But and this is exactly what i think Cort is getting at. Even if it turned out, XMRV was not in any way causative of illness ( im not saying thats the case at all ) we still know that this virus seems to afflict ME CFS patients in much higher numbers than healthy controls. Proving beyond doubt to the likes of The NIH that something is indeed different about us as a patient group, compared to healthy controls.
Most likely a immune system disorder of some kind allowing these viruses to flourish in us, much more easily than healthy people. that in inteself is a revelation and scientific proof of what a lot of us have been saying about the illness for a very long time.
Its here that Corts words mean the most, we do have very strong evidence now. we do have the attention of the medical community, and these new findings can very much turn this all around for everyone. Even if as Cort suggested, XMRV turned out to be some kind of red herring, A red herring with a diamond crusted face, thats no ordinary red herring is it. I will be thinking what i can do in the next few days to help, any of this. we must use this to our advantage agreed Cort. I think the Scientist of the dundee study should be approached by us, as you can see now that shes on our side
Most likely a immune system disorder of some kind allowing these viruses to flourish in us, much more easily than healthy people. that in inteself is a revelation and scientific proof of what a lot of us have been saying about the illness for a very long time.
Its here that Corts words mean the most, we do have very strong evidence now. we do have the attention of the medical community, and these new findings can very much turn this all around for everyone. Even if as Cort suggested, XMRV turned out to be some kind of red herring, A red herring with a diamond crusted face, thats no ordinary red herring is it. I will be thinking what i can do in the next few days to help, any of this. we must use this to our advantage agreed Cort. I think the Scientist of the dundee study should be approached by us, as you can see now that shes on our side
i love this newspaper ad campaign and i already donated.
i think that we need to be ready to do more tho, we need to put bodies on the street. for those of us who are able, please consider your own one-person (or 2-3 people) protest in front of blood donation centers.
we need to ACT-UP, like folks in the HIV/AIDS community did.
i think that we need to be ready to do more tho, we need to put bodies on the street. for those of us who are able, please consider your own one-person (or 2-3 people) protest in front of blood donation centers.
we need to ACT-UP, like folks in the HIV/AIDS community did.
C
Thanks bunches Tina....I was aware of the group and campaign....supported by good people with a great format for decision making in place. Very powerful tool and as Cort has laid out here...now is the time for us to take a strong stand. I just wasn't sure if Corts statement was the final draft. Lots of people dropping their coffee the morning that would print.
Very Frustrated (due to a lack of help)
I've already donated $25 to the big print media campaign and have attempted to get others to do so, albeit not very successfully.
As I mentioned before, I've been putting together a big mailing of my CFS video on disk, along with a very articulate letter about CFS, to folks in media and government. It's cost me about $80 so far for duplication and postage. I am sending this to: my district reps, my federal rep and senators, Henry Waxman (head of the HEALTH committee), Sibelius, Collins, Wanda Jones, Michele Obama, and a few others. (11 people altogether.)
I've also sent the disk to several in the media, including Anderson Cooper at CNN. I asked people here to post comments to my CNN page, but despite my efforts (PM'ing many folks individually) I have only gotten 11 people to actually follow through and leave a comment...which is kind of pathetic. It only takes a few minutes to leave a comment and we certainly need more than 11 to get CNN's attention. http://ireport.cnn.com/docs/DOC-484879
I have also been attempting to get people across the country to submit my video to their local community tv/public access stations. So far ONLY TWO people have been willing or able to help me with this. Both Tree and Otis, who are in Colorado. Dannybex is going to try in Seattle.
This lack of help and participation has been very frustrating to me. I will soon be giving up on my activism because of it.
I've already donated $25 to the big print media campaign and have attempted to get others to do so, albeit not very successfully.
As I mentioned before, I've been putting together a big mailing of my CFS video on disk, along with a very articulate letter about CFS, to folks in media and government. It's cost me about $80 so far for duplication and postage. I am sending this to: my district reps, my federal rep and senators, Henry Waxman (head of the HEALTH committee), Sibelius, Collins, Wanda Jones, Michele Obama, and a few others. (11 people altogether.)
I've also sent the disk to several in the media, including Anderson Cooper at CNN. I asked people here to post comments to my CNN page, but despite my efforts (PM'ing many folks individually) I have only gotten 11 people to actually follow through and leave a comment...which is kind of pathetic. It only takes a few minutes to leave a comment and we certainly need more than 11 to get CNN's attention.
http://ireport.cnn.com/docs/DOC-484879I have also been attempting to get people across the country to submit my video to their local community tv/public access stations. So far ONLY TWO people have been willing or able to help me with this. Both Tree and Otis, who are in Colorado. Dannybex is going to try in Seattle.
This lack of help and participation has been very frustrating to me. I will soon be giving up on my activism because of it.
I find that there are always so many different things going on that it's difficult to know what to spend time on, especially considering how little spare energy many of us have. Hopefully we're getting a bit more co-ordinated now and it will make it easier for us to get things done.
WE JUST BROKE THE 1,000 MEMBER MARK!!! And we have over $4,500! We are moving super fast and will be there soon!!!
Thank you all for joining and donating. This is going to be the hugest splash when the public finds out the whole story - which they will when the journalists jump in and go sniffing around!
-------------------------------------------------------------------------------------------
DreamBirdie: Do NOT give up! That video is great. I have posted the link to it all over and I am sure that others have to.
It takes a great deal of beating on the keyboard late into the night to get just a little attention. But it does come so do NOT give up. That video is just too darn good and we NEED IT OUT THERE!
Stay in the game. You have the goods and that video will be used in places you don't yet know. So keep sending it all over and posting it all over as I do. Don't let your time and talent go to waste - not now. Big hugs - Muffin.
Thank you all for joining and donating. This is going to be the hugest splash when the public finds out the whole story - which they will when the journalists jump in and go sniffing around!
-------------------------------------------------------------------------------------------
DreamBirdie: Do NOT give up! That video is great. I have posted the link to it all over and I am sure that others have to.
It takes a great deal of beating on the keyboard late into the night to get just a little attention. But it does come so do NOT give up. That video is just too darn good and we NEED IT OUT THERE!
Stay in the game. You have the goods and that video will be used in places you don't yet know. So keep sending it all over and posting it all over as I do. Don't let your time and talent go to waste - not now. Big hugs - Muffin.
Please don't give up, Dreambirdie. I think we are witnessing a deep change in the CFS world, and the patient community in particular. We need to act with the sense of urgency Cort has written about. We also need to experiment, try different outlets and methods. Let's see what works! If one project is not successful, then perhaps another one will be. Persistence is one of the qualities we will need to cultivate as individuals and as a community.
Okay then, let's see what you all can do with your sense of urgency.
Could you please put a couple sentences on this CNN page for me... Just 2 sentences from 100 people would really be an eye catcher. THANK YOU!
http://ireport.cnn.com/docs/DOC-484879
A great phrase is golden - I think you've contributed a great phrase. (It really resparked my interest - made me see what was possible)
Connections are vital! Glad to hear you have some to that important area. (I may call on you at some point!)
The CFSAC meeting is in a month - there's an opportunity there; how about another video protest session - with more people.
Dreambirdie: Done. Will continue to put your link out there with the Causes page link.
Don't worry. Your video WILL get the attention it deserves. I also think that it will give some journalists and reporters background information that they did not have and will prod them into looking deeper into all that has gone on for 25 plus years.
Don't despair. Too many of us know that work of yours is amazing. We too are pushing the video. Stay in the game - Keep pushing.
Don't worry. Your video WILL get the attention it deserves. I also think that it will give some journalists and reporters background information that they did not have and will prod them into looking deeper into all that has gone on for 25 plus years.
Don't despair. Too many of us know that work of yours is amazing. We too are pushing the video. Stay in the game - Keep pushing.
Thanks MUffin--
That's my point--BOLDED.
My video is a way to get us some attention, so please USE it.
I've already donated $25 to the big print media campaign and have attempted to get others to do so, albeit not very successfully.
As I mentioned before, I've been putting together a big mailing of my CFS video on disk, along with a very articulate letter about CFS, to folks in media and government. It's cost me about $80 so far for duplication and postage. I am sending this to: my district reps, my federal rep and senators, Henry Waxman (head of the HEALTH committee), Sibelius, Collins, Wanda Jones, Michele Obama, and a few others. (11 people altogether.)
I've also sent the disk to several in the media, including Anderson Cooper at CNN. I asked people here to post comments to my CNN page, but despite my efforts (PM'ing many folks individually) I have only gotten 11 people to actually follow through and leave a comment...which is kind of pathetic. It only takes a few minutes to leave a comment and we certainly need more than 11 to get CNN's attention.
I have also been attempting to get people across the country to submit my video to their local community tv/public access stations. So far ONLY TWO people have been willing or able to help me with this. Both Tree and Otis, who are in Colorado. Dannybex is going to try in Seattle.
This lack of help and participation has been very frustrating to me. I will soon be giving up on my activism because of it.
Believe me Dreambirdie, I've been there! Anyone who has engaged in advocacy has been there. At times it seems fruitless and other times downright painful....but I think this is the time that we fly - when all the little pieces start coming together - when we stop working alongside each other and start working with each other.
For me I think you and your video's should be ensconced inside a larger campaign. (Basically I think you should be our campaign 'videographer') All these pieces should fit together in a coordinated fashion - the ad, the letters, the web stuff, the information site - YOUR video's. At the appropriate moment (not now) they should be shot out to the media.
I see the Patient Alliance leading the charge of a more aggressive in your face activism - we should be an event driven group - doing whatever we can to MAKE A SPLASH. I'm tempted to think that figuring out ways to make a splash should be our SOLE focus.
Ads, clever video events, there's the Sock it to Me Campaign, group protests, email 'bombs' or whatever they call them in which we target specific government officials........That should be our forte...I think