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Phoenix Rising

Monday 14 September 2009

Phoenix RisingPhoenix Rising is an informative newsletter put out monthly by American CFS sufferer Cort Johnson on his Phoenix Rising website.

You can subscribe to the newsletter as well as download each issue.

The latest from Cort is The Conference Edition III: Surprise of the Conference/ Whacking the ME/CFS Patients / Rocking the Research World.

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:

  • Their newest definition (Empirical Definition) relegates the importance of post-exertional problems to near nothingness, requires that patients have only a low level of fatigue to be classified as having ME/CFS and adds emotional factors to the mix for the first time.
  • That new definition added so many new 'CFS' patients to the fold that CDC estimates of ME/CFS prevalence went up fourfold. Dr. Leonard Jason showed it was easy for patients with major depression to be misclassified with CFS using the CDC's new definition - suggesting that many of those patients have emotional disorders.
  • The CDC's big finding of the past few years - using the Empirical definition - is that the rates of sexual abuse are increased in ME/CFS patients.
  • Despite the high disability rates Dr. Reeves has recently stated that ME/CFS is not a disease or disorder at all but 'something' that may lead to a 'real' disease at some point. He now refers to this 'thing' using the term 'unwellness'.
  • A CFID's Association investigation found that the CDC paid a firm almost two million dollars simply to find patients for a study - making this study already the most expensive ever in ME/CFS. The CDC has ignored the CAA's claims of financial mismanagement for the past year.
  • Both the CFID's Association of America, the IACFS/ME and the CFSAC have called for Dr. Reeves to step down and the program to be overhauled.
  • Earlier this year agreeing that the program doesn't collaborate well with the rest of the research field the Dr. Reeves promised to hold an International Conference on ME/CFS treatment this summer - that was the last we heard of it. His first promise was broken remarkably quickly.

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.

Cort Johnson

Phoenix Rising – An ME/CFS Website at http://aboutmecfs.org
Proudly affiliated with ME-CFS Community at http://ME-CFSCommunity.com

 


Phoenix Rising in the news:

14/09/09: The Conference Edition III
22/07/09: A remarkable story of recovery
29/05/09: March 2009 Edition
17/01/09: December 2008 Edition
15/12/08: The News Edition
17/10/08: The Cortisol Edition
15/09/08: Interview with Dr Ken Friedman Part III
10/09/08: Treating Orthostatic Intolerance
25/08/08: Congressional Briefing etc
15/08/08: The Symposium on Viruses in CFS
06/07/08: Interview with Dr Ken Friedman Part II
18/06/08: Nancy Klimas on the Immune System, Treatment and the Future
24/05/08: Interview with Tom Hennessy
08/05/08: The Advocacy Month Part II
25/04/08: Interview with Dr Ken Friedman
16/04/08: February 2008
26/03/08: Interview with Martha Kilcoyne
12/03/08: January 2008
29/01/08: End of year ‘Story Edition’
22/12/07: 2006 Year in Review
27/11/07: Interview with Dr Suzanne Vernon
02/11/07: Interview with Rik Carlson
15/10/07: The Autonomic Nervous System Edition
25/09/07: The CDC Prevalence Definition Edition
07/07/07: First Advocacy Edition
07/06/07: March/April 2007 issue
21/04/07: Special Edition: Pat Fero interview
10/04/07: January/February 2007 issue
08/03/07: Special Edition: IACFS Conference report, part 2
30/01/07: Special Edition: IACFS Conference
19/01/07: January 2007 edition
05/01/07: The IACFS Conference Edition
14/12/06: Special Edition: Dorothy Wall interview
05/12/06: October 2006 newsletter
25/10/06: September 2006 newsletter
04/10/06: August 2006 newsletter
26/07/06: June 2006 newsletter
16/06/06: May 2006 newsletter
02/06/06: March & April 2006 newsletters
28/03/06: January & February 2006 newsletters
04/02/06: December 2005 newsletter
04/01/06: November 2005 newsletter

 


 

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