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.
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Dr. Mikovits tells me this all the time "let the Science speak for itself".Our Science has spoken now we need people to listen. Write your story and speak of the Science and Research that must be funded. The WPI needs federal funding to continue crucial research on XMRV and X associated neuro-immune diseases such as ME, Fibromyalgia, Autism, childrens alzheimers , and a typical MS. Write the President , Vice President , DEpartment of Human and Health Services , NIH, CDC , the senators of your state , congressmen, congresswomen , . Senator Reid is one of the biggest supporters of ME research . Write and thank him for being our biggest advocate in DC. and tell him you demand a congressional hearing into the CDC's misguided treatments of ME. Demand change . Demand respect. Use your frustration , anger and sadness fir all your losses and put that energy into one letter. put a face with this disease , put a life into your letter. Let them know we aren't going anywhere . There are 17 million people suffering / surviving and we want to thrive around the World and we aren't getting better from CBT/GET and vacations!!! We need real treatments , real doctors , infectious disease specialists to treat us. We need centers around the world to specialize in treating the whole disease. it's not a syndrome , it's not an illness that lasts a while . It's a disease . A disease that some are slowly dying from. And others have died. But also tell them about your HOPE. Tell them about the faith you have in them to do the right thing . That's what Democracy is all about . Fighting for the People , speaking for the people . We are the People!!! We can make a difference . We will make a difference !!! All we need is eachother
FOR IMMEDIATE RELEASE
Oct. 2, 2009
Angelina Wyss Gordon
Director of Development
WIN A 95TH ANNIVERSARY EDITION HARLEY-DAVIDSON ULTRA GLIDE
Proceeds benefit the Whittemore Peterson Institute for Neuro-Immune Disease
Reno, Nev. – The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) is raffling off a 95th Anniversary Edition 1998 Harley-Davidson Ultra Glide to one lucky ticket holder. This beautiful and collectable Harley can be yours by purchasing a $100 raffle ticket and only 500 tickets will be sold. The raffle will end on Dec. 11, 2009 or when 500 tickets have been sold, whichever occurs first. If you are interested in purchasing a raffle ticket please visit www.wpinstitute.org or call 775-348-2335.
This unique raffle opportunity will directly benefit WPI and their mission to help find treatment options for those suffering from ME/CFS. The anniversary edition Harley has only 300 miles and every available option sold for its class. Purchased brand new at Reno Harley-Davidson, this high-end touring bike is ready to take you on memorable road trips, or be a part of any great Harley collection. Don’t miss this one-time opportunity to win the bike of your dreams.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe systemic, acquired illness that can be debilitating. Although the Center for Disease Control has predicted that between 1 and 4 million Americans suffer from CFS/ME, almost ninety percent of those patients are without a correct diagnosis or effective medical care.
With community support, WPI scientists and doctors will continue their vital research to advance discovery of the causes of neuro-immune diseases, identify diagnostic biomarkers, and develop effective patient treatments and critical prevention strategies, for patients affected by neuro-immune diseases.
To purchase a raffle ticket and to learn more about the contest rules, please visit www.wpinstitute.org.
Letters can't hurt.
But I don't put hope in that. The government will jump on board as followers. WPI and other private researchers are leading the way.
I would imagine that many other private research labs are looking into the XMRV now also. So while big money is in government, I believe much of the answers will come from private labs. The government will come in and do follow up. It was theirs to have, but they blew it. So let's do both. But my hope is in the private, WPI and the many others now interested.
(Although, to be fair, WPI also had some state funding.)