ME/CFS is hitting the lawmakers in Washington DC right in the chops tomorrow with a provocative half page ad suggesting that everybody, healthy or not, is put at risk when the federal government ignores ME/CFS. The ad has been the fruit of months of work from people with ME/CFS, the MWPCA and PANDORA. The MWPCA has a beautiful website up to showcase the ad and they are releasing a Press Release tomorrow to news organizations across the world.
Now is the time, if there ever was a time, to get involved. XMRV has thrust ME/CFS into the news. Influential members of the media, academia and the govt are involved. The Time For Action Campaign showed that the NIH will hear us if we make a splash…..It’s time to push the government to stop pretending 1,000,000 people don’t exist and start funding ME/CFS like it a real and serious disorder. Let’s take advantage of this bold exciting ad and hammer that message home!
The Time For Action Campaign
has released a series of steps we can use to maximize the Ads effectiveness.
On Monday, December 7th, 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: https://mcwpa.org/wp-content/uploads/…d-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?
Faxing the message and ad (https://mcwpa.org/wp-content/uploads/…d-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 firstname.lastname@example.org. 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 https://mcwpa.org/wp-content/uploads/…d-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.