Phoenix Rising: Newsletter

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(It's possible as we try to integrate our systems that you may get this message twice. If so, we apologize).

The Lights stunned the audience at the 2009 IACFS/ME International Conference with their graphs of pain and fatigue gene levels exploding in CFS patients after exercise as those of the healthy controls decreased. Now they're back with all important validation study. If that study succeeds they may have uncovered a good chunk of what is causing the pain and fatigue after exercise in CFS. If it doesn't then an oh so promising research avenue closes down.

Their work is compelling on a number of levels and in this edition of Phoenix Rising it gets three articles or you can read the quickie version in article 4.

One- Light on ME/CFS I: Bad Reception? A Key to ME/CFS Uncovered? The Light Gene Expression Studies – in the first article we take a look the results of the study (yes, it was positive ), the two subsets they unearthed, the treatment possibilities for each and the full slate of studies ahead of them, including one involving CFS patients and Pfize Corporation.

Two – Light on ME/CFS II: Ground Zero for ME/CFS? The Dorsal Root Ganglia - the Light studies suggest that the systems responsible for producing pain and fatigue have become overly activated in people with CFS. The question now is what is causing this and the Lights have an idea; infected/ injured nervous system structures called the Dorsal Root Ganglia which relay information to the spinal cord are jumbling messages to the brain and interfering with the work of the muscles.

Three – Light on ME/CFS III: Varicella Zoster Virus, Shingles and ME/CFS – a new Herpesvirus for ME? - the Lights aren't the only ones interested in the dorsal root ganglia in ME/CFS; in 2009 Judith Shapiro published a paper suggesting that herpesvirus infections in these and other structure could be causing CFS. The catch? She believes a different kind of herpesvirus that we usually hear about is responsible.

IV – The Light Studies: Pts I, II and III Combined – The Quickie Version - Three articles is alot of read; check out the quickie version for a quick overview of the Lights and Shapiro's work.

XMRV has dominated interest over the past year. While we wait on XMRV's outcome the Lights work reminds us that other potentially ground-breaking work is occurring in ME/CFS elsewhere…

Phoenix Rising – a certified 501 © 3 non-profit

PHOENIX RISING EXPANDING

Phoenix Rising is committed to being a leader in how web technologies can be innovatively used to support people with health problems. We see many ways health support sites could be improved and we plan to make a Phoenix Rising a model of how people with chronic disorders can use how web technologies to empower themselves.

Over the next couple of months we plan to unveil a website that incorporates the blog and the former Phoenix Rising website into one entity. Along with that we will provide a Physician Review program specifically tailored to people with ME/CFS and Fibromyalgia. We will also produce a `Community Rising' program designed to enhance ME/CFS community participation at the local and regional levels.

Much more is in store but Phoenix Rising could use your help. Right now we have a great deal more ideas than the money or the skills needed to make those ideas come to fruition. As we take on more programs we are looking to broaden our base of support in multiple areas. We could use your help in two ways; investing your funds and/or your time andskill in our work.

Advisory Boards – We are looking to find people to serve on Advisory Boards. People on these Boards will provide advice or assistance in various projects, scout out possibilities and provide recommendations and report to the Board on ongoing and future projects.

People who have ME/CFS or who are caregivers or who support our work are invited to join. If you have ME/CFS maintaining your health is our priority and we ask that that be your priority as well. We work around your health not through it.

If you're interested in developing cutting edge and innovative way to support the ME/CFS community PR is a place you want to be.

Open Advisory Boards

Web Work – web technology is an emphasis; web programmers (PHP: in particular), designers, social networkers, system administrators, etc. are needed to enhance and maintain our current programs, develop new ones and scout out new possibilities.

Fundraising and Marketing - This may be the most vital area for PR. PR is a very lean organization and we can and do get a lot done with a little. Given that assistance in fundraising and marketing would reap large dividends for us, and, we believe, for the community.

Non-Profit Administration and Management – We are learning how to work effectively as a non-profit as we go…People with a background in non-profit's could greatly assist us in non-profit management, long -range planning, etc.

Media and Design - some of our projects will require design and video skills. CSS experience, photo and video editing are three areas that could make a major difference for us.

Legal Advice – As PR grows legal advice is becoming more and more important and is a vital need.

Others – Got ideas? Let us know.

If you're interested or think you might be interested please contact us at phoenixcfs@... and leave your phone and/or Skype number. Thanks!-- Cort Phoenix Rising (www.aboutmecfs.org)The Phoenix Rising Forums (forums.aboutmecfs.org)The Bringing the Heat blog (blog.aboutmecfs.org)Proud to be allied with the ME-CFSCommunity Center (me-cfscommunity.com)-- Cort Phoenix Rising (www.aboutmecfs.org)The Phoenix Rising Forums (forums.aboutmecfs.org)The Bringing the Heat blog (blog.aboutmecfs.org)Proud to be allied with the ME-CFSCommunity Center (me-cfscommunity.com)