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Monday 14 September 2009
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Here’s Cort’s introduction:
Welcome to the final IACFS/ME Conference edition.
A Pivotal Event: Before we get to it one important announcement. A possibly pivotal event in our history is coming up. The CDC will present its Five Year Plan for ME/CFS at the federal advisory committee (CFSAC) meeting on Oct 29th/30th. They will be met - for the first time - by a united front of researchers, professional groups, support groups and hopefully patients who want to exert major change in the mediocre and wrong-headed CFS program at that institution. Dr. Leonard Jason called this the best chance in 25 years to effect major change at what it by far the biggest ME/CFS research group in the world.
Here's the latest from the CDC:
Would you categorize your illness as unwellness? Is this the kind of program you would pin your hopes on? Or is this the kind of program that will lead this field right into a ditch? The CDC's CFS program is by far the most expensive and important single program in the field. If you want to make a difference in this disease this is the time and place to do it.
We've opened a group on the Phoenix Rising Forums called M.A.D. About ME/CFS to discuss and coordinate efforts to take advantage of this opportunity. In order to participate in the group you need to register for the forums first. Once you've done that then click on this link or simply click on the Community tab in the menu bar running across the top of the page and then click on Social Groups to go directly to the group.
I will be blogging about this oppportunity until the event occurs.
Now to the Newsletter - The 3rd Reno IACFS/ME Conference edition is in three parts:
The Surprise of the Conference - reviews an absolute scintillating study by Dr. Light that drew oohs and ahhs from the audience. The study came out of left field; nobody's studied anything like it before but it was so compelling that one wonders if Dr. Light has gotten a real handle on what's going on in this disorder.
Whacking the ME/CFS Patients - The repeat exercise studies created by the Pacific Fatigue Lab have really stormed the field. In this section we learn how they're holding up as more groups use them and what they mean for the future of ME/CFS research.
Rocking the Conference/ Rocking the ME/CFS Research Field - Dr. Suzanne Vernon's two presentations indicated she is out to change this field big time. We take a look at her vision of the ME/CFS research field and what she's done thus far to transform it.
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