Can we make a difference?
Our MPN world has changed radically in the past two years… In kicking off the 2013 Small Donation fund-raising program, Zhen reviews the biggest change of all and its impact on our odds of success in our battle with MPNs…. There’s a look at some old friends… a preview of the new MPNforum…and a chance for you to register your opinion (It’s all here.)
In this issue…
The MPNclinic: Questions and answers on..Transfusion dependence…Anemia… Headache and ET ,,,, Erythromelalgia and HU… Pegasys with heart, thyroid issues… Exercise and RBC destruction… (Read all answers here…)
In under three weeks, 889 of us completed the MPN-Related Fatigue survey. Update on the effort to beat fatigue as Dr.Emanuel joins team and focus shifts to the Mayo Clinic.
The Fatigue Project is open for enrollment, Mary Cotter coordinating (Story, survey results, click here)
The Interferon Papers: Special Report : (Read it here).
Part One — Discovering Interferon
Part Two — From Isaacs to Silver, Bringing interferon to MPNs
Part Three – Interferon and the treatment of PV, ET and MF
In the MPN World, these are historic times
A love letter to Miriam, by Arnie McConnell…
A stem cell transplant family event in London…
THE LIST: 100 patient-recommended hematologists…
The Catalog of Articles…
Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNforum articles, write your own story or open a discussion with your…Letter to the Editor
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Comments on: "March 15, 2013" (2)
Hello. I have PV, diagnosed a couple of years ago. I found this site but do not quite understand it. You call it MPN Forum, but I can’t find where the Forum part is, that is Discussion Forum? The site seems to be a newsletter & not a discussion forum, of varying topics. Is this correct? I found another Google forum but have absolutely hated the religious theme & dogma of the forum owner & members & where some of the members prefer prayer & hope over science & therapy. Thanks for any info that you can provide.
Hello, Ed…sorry for the delayed response. MPNforum is a magazine for patients and caregivers to speak out, tell their stories and a forum for presentation and comment on MPN news and scientific findings. The give and take you’re talking about, I think, can be found on many of the MPN Facebook sites and some of the MPN support lists. The Lists are mediated by administrators and Facebook pages are open for instant exchange of views. If you look at the Catalog of Articles — there’s a link down on the bottom of our home page, http://www.mpnforum.com — you’ll get a clearer idea of how the Forum works. I think you’ll several articles and comment on PV that will be useful. ANy questions: ourMPNforum@gmail.com. And thanks for writig.