Jen Brea launches mass-advocacy platform — #MEAction goes live!
Jen Brea is a phenomenon. After working as a freelance writer in China and Africa, she enrolled for a PhD at Harvard in political science but, four years ago, got sick. She had a fever that lasted ten days.
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IACFS/ME on a Roll; Stanford to the Fore! Treatment Primer Gains Recognition and More

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 23, 2012.

  1. Ember

    Ember Senior Member

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    Notice, Cort, that the CDC study explicitly preselects patients with CFS, which is defined by Fukuda (1994) and Reeves (2005), not patients who would be selected using the more restrictive ME definitions (CCC, ICC).​
    The INVESTinME DVD (2012) shows Dr. Peterson's presentation to be lacking in enthusiasm when he describes the CDC's Multi-site Clinical Assessment of CFS. He comments instead on Dr. Kogelnik's dreams and hopes to get his Electronic Medical Records software off the ground in that context.​

    Toward the end of his previous segment, Dr. Peterson recalls as one of the CCC authors, “I was always impressed by the collaborative, consensus type of approach” used by “Bruce Carruthers...in the 2003 definition.”​
     
  2. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Right - nothing on that yet...Kogelnik is trying to get that kind of stuff in there in the next iteration...That's where the juice is, for sure....

    Someone just emailed me that Dr. Unger visited Dr. Klimas's clinic was presented with data indicating CFS is a biological disease (which I believe she does believe it is...the question what is her focus....) and was reportedly impressed...We'll see!
     
  3. Ember

    Ember Senior Member

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    The CDC's approach under Dr. Unger is a far cry from “the collaborative, consensus type of approach” that the Canadian government sponsored under Dr. Carruthers' lead in 2003. At the June CFSAC meeting, Dr. Fletcher volunteered that Dr. Klimas uses the CCC to select her patients. Subsequently the CDC announced its plan to enter a sole-source contract with OMI, apparently excluding Dr. Klimas.

    I see no evidence that Dr. Unger is “doing this exactly right.”
     
  4. Ember

    Ember Senior Member

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    You answered your own question about Dr. Unger's focus shortly after her conference presentation last September, Cort. You posted, “They are sticking with the Empirical definition it looks like - Unger says a recent study shows its not so bad (but Jason's study on it was pretty bad).”

    At the November CFSAC meeting, Dr. Unger committed to producing another umbrella definition with severity scales:
    Dr. Unger's plan to redo Reeves (2005) flies in the face of the work done by the “splitters” on the CCC and ICC panels. Their ME definitions describe a distinct symptom pattern found in a large subset of patients, and they articulate what's known about its underlying pathophysiology. They don't simply describe severe CFS, as Dr. Unger would have them do.

    Last month, Dr. Unger was sufficiently candid as to defend CFS “lumpers,” whereas Dr. Jason “seemed to say 'lumpers' cause problems with the definition.” Not surprisingly, Dr. Unger has chosen to keep those comments, along with any comments about heterogeneity, off the record.


     

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