Blog entries from 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 Americans stricken with NeuroEndocrineImmune diseases and bring back quality of life. You can be part of these...

"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 already being distributed to television stations and cable companies. Please share this video through...

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://apps.facebook.com/chasecommunitygiving/ #2. "like" the... page #3. Type in the search box "Whittemore...

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. ME/CFS Research Video: ME/CFS Research :victory: "http://media.causes.com/1059171?" [media]...

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 in-person testimony is MONDAY, the 18th. You do not need to be a US citizen to participate! Speak Up...

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 http://www.causes.com/causes/511536?m=f042604e http://www.causes.com/causes/511536?m=f042604e Posted by Tina Marie...

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 on the final versions of the PSA contest entries. After receiving patient feedback, the designers made...

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 section on the website dedicated to what experts have to say...

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, biomedical research funding and treatment. We are Invisible No More & Silent No More!!! Here is a...

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 himself day in and out since HE got sick. Thomas is also a very kind and loving man who has helped many...

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. We are now asking for patients to give feedback to the designers. On April 3 at midnight EST, the...

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 leads to news coverage. We need your help in inviting patient organizations to do their part. You might...

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 also been updated with new information. http://www.forum.mcwpa.org/viewtopic.... If you want to...

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 give their feedback between now and April 3 at midnight EST. http://forum.mcwpa.org/viewforum.php?f=8...

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 Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include: factors...