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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Phoenix Rising – December 2008 edition
Saturday 17 January 2009
Phoenix Rising is an informative newsletter put out monthly by American CFS sufferer Cort Johnson on his website CFS Phoenix.
You can subscribe to the newsletter as well as download each issue.
The latest from Cort is the December 2008 edition:
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Here’s Cort’s introduction:
Welcome to the Dec edition of Phoenix Rising. Here we're caught up again in one of the most intriguing and possibly consequential stories in memory: the CFIDS Association of America's accusations that the CDC has essentially been squandering money – lots of money – on dead-end projects on CFS. Now with the full minutes of the federal advisory meeting on CFS present we dive deeper into the controversy and take a quick look at the ups and downs of Dr. Reeves' tenure and ask what happens if he does leave.
As all this was unfolding a group of ME/CFS experts was doing the first external review of the CDC program in ten years and we take a critical look at the report they issued during this rather turbulent period.
• http://phoenix-cfs.org/Dec08CDC.html
The next issue on Phoenix Rising, "Cracking the Foundations", will take a look at the possibly groundbreaking work that the Pacific Fatigue Lab is doing. If you read only one issue this year make sure this is the one! This is really exciting stuff.
Redesign. Phoenix Rising has been undergoing a complete redesign over the past 4 or 5 months and shortly (hopefully!) change dramatically in appearance – be prepared for a very different looking website. The website will, over the course of 2009, include many more ways that you can interact with it and it will expand its scope greatly. Forums and blogs, comment sections, treatment assessment sections, possibly a social networking section, and more will be added. It will also move to a different URL.
Your Vision. To some extent the scope of the website depends on what your vision for a website on ME/CFS is and if you're willing to help make that a reality. My experience with websites is that none of it is easy but that virtually anything is doable. I encourage you to think – to even dream a little – about what you'd really like to see in a website and then contact me and we'll see if we can work together to make that happen.
If you have programming experience, in particular experience with asp.net and/or databases and could provide some guidance/help, I would love to hear from you.
Any Apology! If you received a request to join Facebook from me I apologize. I recently opened up a Facebook account for Phoenix Rising. One of the services they offer is the opportunity to scan your address book for other Facebook members and invite them to join your Facebook account. They ended up inviting a few people already on Facebook and a lot of people not on Facebook. Your e-mail addresses are only used to convey information on ME/CFS; they are not used to promote products! I apologize if you received a request from me to join Facebook.
Yours truly,
Cort Johnson
Phoenix Rising – An ME/CFS Website at Phoenix-cfs.org
You can also subscribe to the newsletter as well as download each issue.
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