Thank you to those that have donated!!! NOW PLEASE SPREAD THE WORD TO OTHER SITES!!
We have a wonderful person on this forum who just donated and did other things that are very helpful. I appreciate her efforts very much.
Please, donate or we can NOT get the message out on CFIDS and XMRV. It will be major news that is dead in the water even after it hits PNAS. The work done by FDA/NIH/CC/NCI/WPI and others will be lost and forgotten and then damaged by the CDC.
Please. do not let this happen. Donate anything you can to this massive and critical media campaign.
Also, please spread the word to the other websites, blogs, etc. that you encounter on CFIDS, XMRV, FM and other autoimmune disorders. Please use the link to the facebook page for now:
http://www.causes.com/causes/511536
One quick message on this campaign is below. A lot of info on this is located on the facebook page by the Admins and that is good info as well. Might make note of that as well. Pleae help get this message out and also donate!!!! Thank you - Muffin.
==================================================
MAJOR NATIONAL MEDIA CAMPAIGN FOR CFS. HITTING THE WASHINGTON POST!!!!!!
WANT ATTENTION, FUNDING AND REAL RESEARCH FOR ME/CFS?
MAJOR MEDIA CAMPAIGN LAUNCHED!
Please see the Facebook page located at:
http://www.causes.com/causes/511536
A group of ME / CFS patients and patient advocacy organizations are forming a patient-driven advertising campaign to address problems in medical care and access to social services. This will be a bold, yet responsible campaign calling for a change. We already have other organizations that have shown interest in signing the advertisements, as a joint message.
As you may know, XMRV news is an opportunity for us to take ME/CFS into the public consciousness. We want to capitalize on this new discovery to create change. We will carefully frame the message to not inflame fear but to create awareness of the problems people with our illness face.
Recent changes in policies at some government agencies, we feel, will create a no-win situation for patients filing for disability and does not take into considering much of the research that has been established with our illness in the past 20 years.
If you want more details on the situation that prompted this, either read the Facebook page or let me know. Contacts for this critical campaign are provided on the Facebook page in the Administrators section.
We ask that you take a look at the project and see if you can lend your support. Please consider helping us in the following ways:
Donate
Get others associated with your group to donate
Get friends and family to donate
Offer your skills, time, energy or resources
Please go to:
http://www.causes.com/causes/511536
You will notice that in a little over a week we have raised over $1,200 and membership is over the 750 mark. These numbers show that this initiative is what the ME/CFS people believe is needed NOW at the most critical point in our diseases history.
If you would like to donate but not through Facebook, then you can do so through the PayPal link at PANDORA's site
http://www.pandoranet.info/ The PayPal link is at the top left of the home page. All donations made through the PANDORA PayPal link will funnel money straight through to this campaign. The PANDORA site already has the infrastructure in place including the PayPal account. When using the PayPal account on the PANDORA site, please ensure that you put "Our Voice, Our Message, Our Lives" in the description. This ensures that donations go to this media campaign. The hardworking folks running this Campaign are getting the Paypal link fixed on their Facebook site, but until that point, please use the PANDORA PayPal link.
Be sure and enter "Our Voice, Our Message, Our Lives" in the Description to make sure the money will go to this campaign. We welcome other organizations setting up their own donation fund for this campaign. Contact our Administers for transferring donations to this media campaign. Thank you!!