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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 register, simply click the Register button at the top right.
Blog entries by muffin
Big news of FIU and NEI Center:
http://www.facebook.com/PANDORAORG
P.A.N.D.O.R.A., Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
PANDORA's vision is to interrupt the cycle of suffering experienced by an estimated 20 million...
"http://archive.constantcontact.com/fs048/1098473133029/archive/1105256900028.html"
Congratulations to Lynn Bousquet on winning the MCWPA public service announcement contest.
Months of hard work and valuable input from patients have produced a public service announcement that is...
PLEASE VOTE FOR WPI. SEE EASY DIRECTIONS BELOW:
http://chasecommunitygiving.contextoptional.com/charities/205904991-whittemore-peterson-institute-for-neuro-immune-disease
Takes you right to the Whittemore-Peterson Institute's Chase site for easy voting!!!
OR,
#1. Go here...
http://www.causes.com/causes/511536?m=f042604e
Public Service Announcement Winner in the MCWPA Contest
Posted by Tina Marie Miller Tidmore on Apr 18
See the winning video of the MCWPA Contest. Congratulations to Lynn. Please share this video to anyone and everyone. Let's go viral...
Posted by Karen Mascuch Ravitz on 16 April
The Chronic Fatigue Syndrome Advisory Committee will meet on May 10th and 11:
"http://frwebgate1.access.gpo.gov/cgi-bin/TEXTgate.cgi?WAISdocID=sxS1ji%2F1%2F1%2F0&WAISaction=retrieve"
The last day to submit your written testimony or request an...
LINKS ARE IN " " SO PLEASE COPY AND PASTE INTO YOUR BROWSER. WE HAVE BEEN HAVING PROBLEMS WITH FACEBOOK CAUSES CHOPPING OFF THE END OF THE LINKS. PLEASE CHECK OUT THE VIDEOS AND VOTE!!!!
Time to Vote For ME/CFS Worldwide Patient Alliance - Public Service Announcements...
Time to Vote for PSA - Time to Vote For ME/CFS Worldwide Patient Alliance (www.mcwpa.org)
http://www.causes.com/causes/511536?m=f042604e
Posted by Tina Marie Miller Tidmore on Apr 11
You get to have your say with MCWPA. We are now calling for ME/CFS patients and their families to vote...
http://apps.facebook.com/causes/posts/716200
Have Your Say!
Posted by Andie Pring on 5 April 2011
Want a voice? Feel like no one is listening to you? Well, here's an action you can be involved in that will help educate the public on what it truly means to have this disease.
We have a...
May: ME/CFS and other NEIDs Awareness Month
Posted by Karen Mascuch Ravitz on 3 April 2011
"http://www.causes.com/causes/511536?m=f042604e"
Awareness Month is Quickly Coming Up!
We as patients, advocates, friends and family can make a positive impact this year on ME/CFS awareness...
Many of you know Thomas Hennessy Jr. For those that don't know Thomas you should know that he has been fighting for us for a good three decades. HE was the person to come up with Awareness Day and created RESCIND, inc. Thomas is one of the very original ME/CFS (CFIDS) Advocates who has killed...
NEED FEEDBACK ON THE MCWPA.ORG PUBLIC SERVICE ANNOUNCEMENTS! SEE THE YOUTUBE LINKS TO VIEW!
Posted by Tina Marie Miller Tidmore on 2 April
MCWPA is about the patients' voice. In a contest, we asked patients to create videos to be used as public service announcements. We have six entries...
Time to Contact Patient Organizations
http://apps.facebook.com/causes/posts/711549?m=90525af8
Posted by Tina Marie Miller Tidmore 30 March
May 2011 will be big for ME/CFS awareness. Awareness means getting the message to the public. One way to do this is through advertising, which...
MCWPA.org Website and Forum Changes
Posted by Andie Pring (MCWPA WebMistress:victory:)
We are pleased to announce that the MCWPA website has recently been updated with new content and a more intuitive navigation bar.
http://mcwpa.org/
In addition, the FAQs section of our forum has...
Your Voice on Public Service Announcement
Posted by Tina Marie Miller Tidmore 28 March via Muffin.
The MCWPA team is pleased to announce that five entries have come in for the public service announcement contest. We are now inviting the patients to go to the Patient Discussion Board and...
http://www.hhs.gov/advcomcfs/
Chronic Fatigue Syndrome Advisory Committee (CFSAC)
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of...
PLEASE Read so everyone knows what MCWPA has done and is going to do. So much done in so little time and yet more to do especially in the next couple of VERY critical months. Read and get involved in any way possible!
2,172 Members as of 25 March 2011 - MCWPA started in August of 2010...
Both the SOK and CFSAC are coming up and it seems like a very goood idea for those of us attending either/both to wear shirts that show how unified we are. I think the government needs to see that we are a huge and growing force of sick people who have had more than enough and are going to put...
KRFC Radio Show Announcement
Tina Tidmore with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Worldwide Patient Alliance on Holy Hormones Honey!, March 7 from 6 to 7pm MST with live audiostream.
CFS, is a debilitating disease that affects millions of people in the United States...
Over 500 have viewed the Doctors Need to Know instructions. We have 43 who have joined the event on Facebook.
Doctors Need to Know Growing
Posted by Tina on Mar 3 (via Muffin)
Over 500 have viewed the Doctors Need to Know instructions. We have 43 who have joined the event on Facebook...
Get the News to Doctors Posted by Tina Marie Miller Tidmore on 1 March.
So far, 243 people have viewed the instructions for "Doctors Need to Know". It's March 1, launch date. So, we invite you to see the public announcement of this action: http://mcwpa.org/2011/03/doctors-need-to-know/...