bombardment

jimbob

ME/CFS84-XMRV+
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myrtle beach, s.c.
Let me know what you think? We compose a letter to the CDC asking them what they are doing in regards to the recently discovered retrovirus , the millions of people who may be suffering worldwide from it's involvement, and the potentially dangerous situation it may cause to our blood supply! etc. etc. Then once a day, everyday indefinately we each e-mail this and also forward cy to a major news network, possibly the same one?
 

jimbob

ME/CFS84-XMRV+
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myrtle beach, s.c.
Can somebody a little more knowledgable than me write something fairly concise and to the point so we can get this started? Than it's just 2 clicks a day and bam!!!!!
 

justinreilly

Senior Member
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NYC (& RI)
Macros

IMO might as well send it to everyone in the lines of command from both Unger and Hanna up to Obama and every major news outlet everyday. If someone knows how to do a macro on email where it automatically fills in the person's name in the greeting and sends the emails individually with one click, please let us know. Also a macro to autosend everyday. That way after it's first set up we don't have to do anything.
 

Lynn

Senior Member
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CAA Grassroots Action site

Jimbob, what a great idea!

I don't think we have to reinvent the wheel. At least not yet. The CAA has a Grassroots Action Center page on their site. http://www.capwiz.com/cfids/home/

All you have to do is put your zip code in and you can get emails sent to your local media, elected officials, Secretary of Health, and the President. They have some email templates or you can write your own.

I have used it three times and it is very easy. I would be willing to help write some email templates from our members (I warn you that I am big on benign plagiarism).

Here is a letter I wrote in May (cobbled together from the CAA and WPI):

As one of your constituents, I am writing today to ask that you request research funding to continue studies by the Whittemore Peterson Institute (WPI) regarding XMRVs role in chronic fatigue syndrome (CFS). Each year, CFS costs our economy $17-25 billion in medical expenses and lost productivity (Source: DePaul University).

I became disabled with CFS in 2000. It is an illness that has robbed me of my career and social relationships. I keep thinking that someone will find the cause but its been ten years and hope is getting harder to come by.

Last year, the Whittemore Peterson Institute (WPI) reported that they, the NCI, and the Cleveland Clinic had found XMRV, a new retrovirus, in 67% of patients with CFS. That finding for those with CFS is the first hopeful link to a future without illness.

The National Institutes of Health is involved in this research and is mobilizing its resources to better understand the role of XMRV in human disease, including CFS. But we need congress to dedicate resources to conduct studies outside of the NIH to bring answers that will end this cycle of disease. Good science will ultimately lead to the answers.

With the scientific momentum ignited by the XMRV research, now is the time to expand the government's efforts to understand CFS and for the millions who suffer worldwide. WPI requires funds to further investigate XMRV in patients with chronic fatigue syndrome (CFS). Please request the funding to help them find the answers to end this cycle of disease.

I will monitor your actions and hope I can count on your commitment to return people with CFS to healthier, more productive lives.
I don't think they will keep it up forever because I understand it is very expensive. But we may as well use it while they have it. If we all sent one letter to all of these people each day, I think it would get our message across.

Let's do this!

Lynn
 

alex3619

Senior Member
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Logan, Queensland, Australia
Hi

I like this idea in principle, but you need to be careful not to get caught with antispam legislation. You also need to consider that the CDC and everyone else will just treat you like a spammer and block your emails - all of them. On the other hand, if their spam count goes up and up and up, they will still get the message.

bye
Alex
 

justinreilly

Senior Member
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NYC (& RI)
Jimbob, what a great idea!

I don't think we have to reinvent the wheel. At least not yet. The CAA has a Grassroots Action Center page on their site. http://www.capwiz.com/cfids/home/

All you have to do is put your zip code in and you can get emails sent to your local media, elected officials, Secretary of Health, and the President. They have some email templates or you can write your own.

I have used it three times and it is very easy. I would be willing to help write some email templates from our members (I warn you that I am big on benign plagiarism).

Here is a letter I wrote in May (cobbled together from the CAA and WPI):



I don't think they will keep it up forever because I understand it is very expensive. But we may as well use it while they have it. If we all sent one letter to all of these people each day, I think it would get our message across.

Let's do this!

Lynn
This is an idea. My only problem with it is that you have to send the CAA's language which is pretty weak imo and your message gets put in the middle where they may not see it (i don't know if they make it stand out). But in the absence of having a macro set up I think it would be a good idea as a start.
 

justinreilly

Senior Member
Messages
2,498
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1,225
Location
NYC (& RI)
Hi

I like this idea in principle, but you need to be careful not to get caught with antispam legislation. You also need to consider that the CDC and everyone else will just treat you like a spammer and block your emails - all of them. On the other hand, if their spam count goes up and up and up, they will still get the message.

bye
Alex
Good point about the spam. I guess we could each use throw away email addresses for this so our everyday email address wouldn't get blocked.
 

Lynn

Senior Member
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250
Hi Alex,

You don't have to use the CAA's message. You can write your own. Of course putting together a group piece is very difficult because everyone will have a different opinion about what should be said. But it probably wouldn't be too hard to put together a few key points that people could include if they choose.

Lynn