I don't know if this has been discussed earlier but I am just getting around to listening to the NIH "Demystifying Medicine - CFS" presentation and towards the end I was completely stunned to here Fred Gill say that while listening to the presentations by Drs. Lo and Alter, he was struck by the thought that the heterogeneity of CFS (in the 1994 and 2005 CDC definitions) might be important.
The comment is at roughly 115:45 into the recording.
You have got to be &%$&(*& kidding me. Gill had just presented eight slides on diagnosing CFS!
This is THE NIH CFS specialist trained under the preeminent Dr. Strauss! And in spite of Leonard Jason's numerous papers on the CDC's widening criteria for the diagnosis of CFS and the resultant increasing heterogeneity of the CFS population being studied by the CDC, NIH and anyone using their criteria it JUST DAWNED UPON HIM THAT THESE DEFINITIONS MIGHT PRODUCE HETEROGENEOUS RESEARCH COHORTS/Patient groups!!!!
What in the $%!! has the CAA been saying to the NIH and CDC using their inside voices? If the CAA cannot even convey to the CDC and NIH that the definition developed in part by Suzanne Vernon produces a heterogeneous group of patients for their research - in spite of all the work that has been done by Dr. Jason - what good is the CAA?
The CAA helped fund Dr. Jason's work and there is a complete absence of evidence that they have successfully conveyed even the most basic of principles to the NIH and the CDC.
We are doomed until we have another advocacy group and these dinosaurs that are either advising or heading up these large and expensive studies have retired or died and gotten out of the way!
The comment is at roughly 115:45 into the recording.
You have got to be &%$&(*& kidding me. Gill had just presented eight slides on diagnosing CFS!
This is THE NIH CFS specialist trained under the preeminent Dr. Strauss! And in spite of Leonard Jason's numerous papers on the CDC's widening criteria for the diagnosis of CFS and the resultant increasing heterogeneity of the CFS population being studied by the CDC, NIH and anyone using their criteria it JUST DAWNED UPON HIM THAT THESE DEFINITIONS MIGHT PRODUCE HETEROGENEOUS RESEARCH COHORTS/Patient groups!!!!
What in the $%!! has the CAA been saying to the NIH and CDC using their inside voices? If the CAA cannot even convey to the CDC and NIH that the definition developed in part by Suzanne Vernon produces a heterogeneous group of patients for their research - in spite of all the work that has been done by Dr. Jason - what good is the CAA?
The CAA helped fund Dr. Jason's work and there is a complete absence of evidence that they have successfully conveyed even the most basic of principles to the NIH and the CDC.
We are doomed until we have another advocacy group and these dinosaurs that are either advising or heading up these large and expensive studies have retired or died and gotten out of the way!