Time For Action Campaign: Tell Congress to Act on the Washington Post Ad

[Otis]

Please distribute the following link far and wide. The campaign uses the MCWPA ad as part of a campaign to contact members of Congress in order to make them aware of the ad, it's contents and the implications of XMRV on their constituency.

The link to the campaign page is here: http://sites.google.com/site/timeforactionad/

The contents of the web page are as follows:

*Please Distribute Widely*​

Time For Action Campaign

Tell Congress to Act on the Washington Post Ad

Organizer: Charlotte von Salis (wpostad@gmail.com)
​

On Monday, December 6th, the Washington Post publishes the first-ever informational ad on ME/CFS with emphasis on the new retroviral findings. To get the most out of this, I ask all those affected by ME/CFS to send the brief message below to their Congressperson and Senators. (The ad can be found here: http://mcwpa.org/wp-content/uploads/2010/12/Virus-Ad-for-Web1.pdf)

Suggested Message:

Did you know a new HIV-like virus has been found in ME/CFS patients as well as potential blood donors? ME/CFS patients like me paid for a Washington Post ad alerting people like you about this health crisis. Please take a look! It's in the main section of the December 6th issue of the Post and can be found here: http://mcwpa.org/wp-content/uploads/2010/12/Virus-Ad-for-Web1.pdf

The CDC has been aware of the potential infectious nature of ME/CFS since it investigated an outbreak of the disease 25 years ago. Yet it took a private lab to discover this debilitating disease is linked to a retrovirus.

What are YOU doing to ensure our federal health agencies are using their resources to fund and thoroughly investigate the infectious agents found in ME/CFS patients like me?

Sincerely,

-----------------------------

Faxing the message and ad (http://mcwpa.org/wp-content/uploads/2010/12/Virus-Ad-for-Web1.pdf) is preferable. If you don't have a fax machine, ww.faxorama.com* allows you to send two free fax messages daily via email. If you prefer to email, that's OK too, of course.

To find your Congressperson's and Senators' fax and email addresses, go to www.congressmerge.com/onlinedb. Scroll down to the map of the US and follow the directions on the left side of the page.

Please let me know who you've contacted and how at wpostad@gmail.com. That way we can come back at another time and remind the recipients that they did, indeed, receive this!

Thank you for participating in this Action!

*Note: Step-by step directions for using Faxorama:

a) Go to www.faxorama.com and take note of the type of files that can be attached by looking at the file extensions listed above the "Attachments" windows.

b) Copy and paste the sample letter into your word processor, then "save as" with a file extension faxorama accepts. Remember the name of the file or rename it to one that's easy to remember, then click "save".

c) Go to http://mcwpa.org/wp-content/uploads/2010/12/Virus-Ad-for-Web1.pdf and save the ad to your computer.

d) Go to www.faxorama.com. Fill in the Sender and Receiver information.

e) Click on "browse" next to the Attachment #1 window. This will take you to the documents, including the sample letter you saved, that are stored on your computer's hard drive. When you find your sample letter file, click on "open". The file name will now show up in the attachment window on faxorama.

f) Click on "browse" next to the Attachment #2 window and open the the ad file on your computer.

g) Copy the confirmation code and click on "Send free fax now". You should receive a confirmation email when your fax is sent.

 

[Marty]

Excellent idea, Otis. Paper probably works best. May I add that we might also send the same information in an email with links to both the ad and to the Friday column about the Red Cross banning blood donations: http://voices.washingtonpost.com/checkup/2010/12/red_cross_bars_chronic_fatique.html . The email is more easily distributed than paper and might reach more people; however the paper to the congressional representative is still primary.

 

[RivkaRivka]

great going, charlotte! thanks for putting this together! i'll be sure to do this! -- rivka

 

[CBS]

What about adding a list of all the CFSAC recommendations over the past decade and noting which have been acted upon and those that have been ignored? A score card of sorts. Here is a list of CFSAC recommendations compiled by DHHS: http://www.hhs.gov/advcomcfs/recommendations/10292009.pdf

The recommendations themselves seem pretty flaccid. Even so, only a small minority have been achieved. Anyone care to create an easier to read version. I'd take a shot but wouldn't be able get to it until later today at the earliest.

 

[Roy S]

E-mails could in addition be printed out; perhaps altered a bit and sent as letters. I'd suggest a little hand writing on them for a personal touch to differentiate them from "Astroturfing" (fake grassroots)

Thanks to Charlotte. U2 Otis.

 

[mezombie]

Thanks to Otis and Cort for posting this here. And thanks for the supportive replies and good ideas, Marty, Rivka, Roy, and CBS.

Please note that snail mail to Congress is now processed very carefully and doesn't arrive at it's destination for weeks. And when it does arrive, the paper is all crinkly and odd looking. So even Members of Congress and Senators suggest FAX or email.

A FAX delivers a paper version of the letter and the ad to Congress and gets around the snail mail problem.

The "suggested message" is just that. It's short and simple because that worked very well for the first Time for Action. The idea is to get a lot of patients involved.

So if anyone who wants to personalize the message and add other points, that's fine.

Charlotte

 

[George]

Great Press Release on the PR Wire!

This is a really beautifully written press statement. I'm hoping that a lot of newspapers pick this up this week! Great work! Now we need to help back them up by sending our e-mails and faxes!

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post


--Possible New HIV-like Retrovirus in Blood Supply--

CORAL GABLES, Fla., Dec. 6, 2010 /PRNewswire-USNewswire/ -- In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life. CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide.

(Photo: http://photos.prnewswire.com/prnh/20101206/DC12334 )

ME/CFS first gained national attention amidst the AIDS epidemic in the early 1980s. As early as 1991, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.

"This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now."

A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.

"The NIAID, the national institute responsible for infectious disease research, has yet to fund XMRV research in ME/CFS or any other disease," explains Annette Whittemore, President of WPI. "WPI has had its last six XMRV-related grant proposals turned down; despite the fact that our researchers have proven XMRV is transmissible and infectious."

MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million). Patients also ask for antiretroviral and Ampligen clinical trials that have shown great promise in mitigating the effects of ME/CFS.

For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/ .

About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc., Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.

CONTACT:
Sita Harrison/Tina Tidmore
561-313-1835
205-680-6890
Media@mcwpa.org

 

[Merry]

Thanks to the people who worked on this project.

I faxed Senator Sherrod Brown. The other Ohio senator and my representative in the House are leaving office.

 

[Otis]

Merry,

Thank you! We are hoping the lame duck congress will take action so please contact your outgoing reps as well.

I suspect we'll go to work on the new congress next year.

Thanks,
Otis

 

[Tuha]

what about to support this Press release also in European Union by sending a simply fax/ letter/mail to the EU authorities/institutions. Do we have a list of EU authorities who we could attack? I just found John Dalli from Malta who is european commissioner for Health and Consumer Policy. Anyone some suggestions?

to contact him:
John DALLI
European Commissioner for Health and Consumer Policy
European Commission
B - 1049 Brussels
(Belgium)

email: cab-dalli-webpage@ec.europa.eu

 

[Otis]

Another thought is to contact your local congressperson's staff for a phone or face-to-face discussion. My congressman has a Constituent Advocate for this type of input.

 

[RivkaRivka]

i contacted my MA congressional delegation! (email, as i could not get fax to work). will try fax again tomorrow!

 

[Merry]

Merry,

Thank you! We are hoping the lame duck congress will take action so please contact your outgoing reps as well.

I suspect we'll go to work on the new congress next year.

Thanks,
Otis

Otis,

Thanks for the advice. I have now faxed Senator Voinovich and wil fax Representative Killroy in the morning.

Merry

 

[camas]

I e-mailed Wyden, Merkley, and Blumenauer. Also sent a link to that excellent press release to The Oregonian. They covered the WPI findings in 2009, but they haven't written about XMRV since, so I hope they use it.

 

[Jessrose21]

I sent my three faxes. Good idea to send a link to the press release to our local papers. I'll do that tomorrow!

 

[RivkaRivka]

dec 7 2010

i faxed:

senator kerry
senator brown
congressman markey

xxoo
rivka

 

[citybug]

I faxed ny senators and am working on extra congress people in my state. The budget wasn't passed when they left, and CFS was added to the list for Dept of Defense congressionally mandated research, so maybe they could still do something.

 

[mezombie]

Thank you all for participating in this Campaign!

Could you please do me a favor?

After you've contacted Congress, could you drop me a note at wpostad@gmail.com letting me know who you contacted and how?

Thanks!

Charlotte

 

[xrayspex]

wrote tammy baldwin and herb kohl so far

 

[mezombie]

Thanks, xrayspeck!

Please note: Word has it that Congress is going to recess late for the holidays, possible just before Christmas.

So they are still in Washington, DC, still ripe for the picking (on in this case faxing or emailing)!

The sample text (found in the first post of this thread) asks for them to look into what the heck NIH and CDC have (not) been doing. With little money available, this coming year we might, might, just get lucky and get a Congressional hearing on this matter. Several Congressmembers have already stated they expect to really look into what the Federal agencies are doing with their money.

So let's put the bug in their ear now!

We want a Congressional investigative hearing!