I suggest that we have a serious discussion about the CFIDS Association of America and their role at the dawn of the new XAND epoch.
Because of both the general nature of its reaction to this new beginning, because of a number of statements that the groups made online, and because of specific statements from important CAA leaders, I am led in an unsettling direction: I am led to question the CAAs priorities in a number ways, I am led to wonder about the motivations of certain CAA personnel, and I left wondering what role it should play from here on out.
I could mention the lackluster reaction of the CAA to the XMRV news (and compare it to the reaction of the European ME alliance). I could mention the weird Facebook postings that heralded failed replications of prostate cancer/xmrv studies (though later the CAA insisted they were trying to aid the CFS community). But the most worrying thing has been Dr. Vernon's reaction to the new XMRV era.
To make my point, I refer to Hillary Johnson's most recent blog post. In this paragraph she imagines a conversation with William Reeves at the CDC.
"Bill is so out of his league here, but thats hardly news.
Heres another: Bill says he cant interpret the findings because Science didnt state the age and gender of the patients. Since when do viruses respect or differentiate between men and women, kids and grown ups? A person could only say such a stupid thing if they didnt believe XMRV existed, had gone fishin during Virology 101, or had some political agenda that might be characterized as propaganda. Bill also suggested the paper didnt mean much because he, Bill, didnt know how the patients were selected. The patients were clinically defined by every medical criteria, including the CDCs. What more does Bill want? Does he need to be assured theyre all overweight depressed women living in Wichita who Bill rounded up in a phone survey?"
Alas, you could replace the name "Bill" in the paragraph above with "Suzanne." Vernon's reaction mirrored Reeves' in that she expressed strange doubts that don't fit science.
...
I leave it to others to analyze why Vernon and the CAA are reacting like this. I don't think vast CAA-CDC conspiracies are necessary. I think we can argue from some basic principles about how threatened professionals and organizations react.
In any case, thumbs up or thumbs down, I think we have some texts on which we can base a serious debate about the CAA's performance in the first few weeks of the xmrv era.
I don't write to attack the CAA. It's arguable that when facing an ineffective CDC and a medical community that's always been incurious in the area of CFS/XAND we need to circle our wagons. But if we decide that the CAA is shooting inward there's no point in defending them.
******************************
Vernon or the CAA has since edited the "Xplained" article to remove the section that mirrored Reeves.
Because of both the general nature of its reaction to this new beginning, because of a number of statements that the groups made online, and because of specific statements from important CAA leaders, I am led in an unsettling direction: I am led to question the CAAs priorities in a number ways, I am led to wonder about the motivations of certain CAA personnel, and I left wondering what role it should play from here on out.
I could mention the lackluster reaction of the CAA to the XMRV news (and compare it to the reaction of the European ME alliance). I could mention the weird Facebook postings that heralded failed replications of prostate cancer/xmrv studies (though later the CAA insisted they were trying to aid the CFS community). But the most worrying thing has been Dr. Vernon's reaction to the new XMRV era.
To make my point, I refer to Hillary Johnson's most recent blog post. In this paragraph she imagines a conversation with William Reeves at the CDC.
"Bill is so out of his league here, but thats hardly news.
Heres another: Bill says he cant interpret the findings because Science didnt state the age and gender of the patients. Since when do viruses respect or differentiate between men and women, kids and grown ups? A person could only say such a stupid thing if they didnt believe XMRV existed, had gone fishin during Virology 101, or had some political agenda that might be characterized as propaganda. Bill also suggested the paper didnt mean much because he, Bill, didnt know how the patients were selected. The patients were clinically defined by every medical criteria, including the CDCs. What more does Bill want? Does he need to be assured theyre all overweight depressed women living in Wichita who Bill rounded up in a phone survey?"
Alas, you could replace the name "Bill" in the paragraph above with "Suzanne." Vernon's reaction mirrored Reeves' in that she expressed strange doubts that don't fit science.
...
I leave it to others to analyze why Vernon and the CAA are reacting like this. I don't think vast CAA-CDC conspiracies are necessary. I think we can argue from some basic principles about how threatened professionals and organizations react.
In any case, thumbs up or thumbs down, I think we have some texts on which we can base a serious debate about the CAA's performance in the first few weeks of the xmrv era.
I don't write to attack the CAA. It's arguable that when facing an ineffective CDC and a medical community that's always been incurious in the area of CFS/XAND we need to circle our wagons. But if we decide that the CAA is shooting inward there's no point in defending them.
******************************
Vernon or the CAA has since edited the "Xplained" article to remove the section that mirrored Reeves.