Blogging live from the RAC -- ct'd

To follow along, the draft plan is at:    http://www.scribd.com/doc/79701467


The call-in number is toll-free 1-800-767-1750 and the access code is 82477# .

The full agenda provided to RAC members today is here:  https://docs.google.com/open?id=1Sas5UyjORc9Jb0mwCQxNfOfvPT1ofYQOtA5l2OytHsHm-Ve8SrgCTbTaLLZQ.


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12:01 p.m., discussion moves to Case Definitions (starting bottom of p. 25 of the draft)


Dr. Steele noted that research to establish a case definition for GWI.   Discussion of whether or not there's enough data for a case definition.  IOM says it's a multi-system, multi-symptom illness, is this not a definition?  Doesn't prove any information for researchers on how to define groups of veterans with these symptoms.

Research won't be effective unless there's an agreed upon phenotype, existing case definitions vary all over the place, a rigorous case definition is needed and you won't find targets, just signals, and you won't learn very much.  Even if it might exclude some veterans who might....  Clinical trials have very clear requirements, including exclusionary factors.  Not intended to be representative of anything, intended to reduce variables. Need to be as consistent as possible.

also include patients who are beyond that scope, ultimately objective markers will identify what GWI *is*.  Argues that most need to meet Kansas criteria, but to allow some to go beyond that.

Very pleotropic phenotype.  When trying to develop biomarker, you have to narrowly identify your target.

Must come up with a definition that is generally accomplished.  In order to get anywhere, we have to decide what this is, it's not going to be perfect, but we need to start.

I noted that deployed and non-deployed have illness rates, but that there logically has to be something that is at the root of the higher rates.  Argued for narrowness in analytical efforts, recognizing that treatments will help all.

Group recommended a process to develop a case definition.  Use Kansas definition in the meantime.

Mr. Binns notes that edits have pluralized "illness" -- not just a semantic issue, notes the philosophical issue.  IOM has decided this for us, it is an "illness".   Question: on the basis of what?  If you want to find markers, you've got to have an agreed definition for being there, doesn't pretend to identify population, first step.  Change "symptomatic illnesses" back to "symptom illness".  Same pattern of symptoms.

Ensuing lengthy discussion.  Discussion of syndrome versus illness. Illness versus illnesses. Is this plan about GWI or about all illnesses that might be afffecting Gulf War veterans (including metabolic syndrome, cancers, etc.).