• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

XMRV International Letter Writing Day!!

V99

Senior Member
Messages
1,471
Location
UK
http://www.facebook.com/pages/ESME-European-Society-for-ME/326113349124?created
This was posted on the ESME Facebook page.

http://www.dancingwiththesandman.blogspot.com/

MAY BE REPOSTED

Now's your chance to get involved. Using the templates and email addresses provided (see links below) send as many letters to media and government officials as you possibly can. The aim is to get the interest of the media and reach the main government officials. So far, the XMRV scandal has been under-reported. If we don't get the information to the appropriate people this important study will be buried. It may be hard to believe, but the very same thing happened 18 years ago to a young researcher named Elaine DeFreitas, who also discovered a link between a retrovirus and ME/CFS. The CDC destroyed DeFreitas' chances of funding and the research languished.

Here is the link to the templates (please note you will need to be a member of Facebook), kindly donated by members of the ME/CFS community. Please feel free to add your own letter.

http://www.facebook.com/group.php?g...2738#!/topic.php?uid=112160662164471&topic=39

Here is a link to various email addresses (please note you will need to be a member of Facebook). Please feel free to add to this list.

http://www.facebook.com/topic.php?uid=112160662164471&topic=38

Please add this information to any blog posts you are writing and forums you visit. We want to get as many people involved as possible.

Andrea Whittemore has reported that the researchers are being distracted from their work due to the volume of mail they are receiving. Please refrain from writing to them. The aim of this campaign is to get the media onboard and reach the main government officials TODAY.

Happy writing!
 

citybug

Senior Member
Messages
538
Location
NY
We should keep the letters coming to change the CDC definition, fund research in XMRV on all continents, publish NIH paper, do a replication study of WPI findings.