Comments on: Weekend sendoff: skeptical yummies http://newly-nerfed.net/2010/02/26/weekend-sendoff-skeptical-yummies/ Wed, 01 Sep 2010 11:22:53 +0000 hourly 1 By: Joey http://newly-nerfed.net/2010/02/26/weekend-sendoff-skeptical-yummies/comment-page-1/#comment-787 Joey Sat, 27 Feb 2010 09:35:53 +0000 http://newly-nerfed.net/?p=1742#comment-787 Hi krakow, and thanks for your comment. I'm not sure I agree that they have to be responsive to patients' preferences. I've heard that argument elsewhere and I'm not saying it's invalid, but I don't personally buy it. Yes, they provide quotes about how getting XMRV testing isn't recommended. However, they're tucked inside a document about how to get tested! That's a pretty mixed signal for patients who aren't necessarily at their best when it comes to rational thought, and can't necessarily separate "information provided by the CAA" from "information supported by the CAA." I've seen suggestions that individuals getting privately tested will contribute to the scientific consensus. Why isn't the CAA addressing these misconceptions? (Note I'm not making <i>any</i> kind of reference here to patients' intelligence or even capacity for critical thinking, but solely the problems many of us, certainly myself included, face with cognitive dysfunction.) I think what I want to see at this point would be the association splitting into two bodies, one of which focuses solely on patient advocacy and another that focuses solely on research and fundraising. Because both of these issues are crucial, but I feel at this point they are in conflict. And I also realize this isn't feasible at all, but oh well. Hi krakow, and thanks for your comment.

I’m not sure I agree that they have to be responsive to patients’ preferences. I’ve heard that argument elsewhere and I’m not saying it’s invalid, but I don’t personally buy it. Yes, they provide quotes about how getting XMRV testing isn’t recommended. However, they’re tucked inside a document about how to get tested! That’s a pretty mixed signal for patients who aren’t necessarily at their best when it comes to rational thought, and can’t necessarily separate “information provided by the CAA” from “information supported by the CAA.” I’ve seen suggestions that individuals getting privately tested will contribute to the scientific consensus. Why isn’t the CAA addressing these misconceptions?

(Note I’m not making any kind of reference here to patients’ intelligence or even capacity for critical thinking, but solely the problems many of us, certainly myself included, face with cognitive dysfunction.)

I think what I want to see at this point would be the association splitting into two bodies, one of which focuses solely on patient advocacy and another that focuses solely on research and fundraising. Because both of these issues are crucial, but I feel at this point they are in conflict. And I also realize this isn’t feasible at all, but oh well.

]]> By: krakow http://newly-nerfed.net/2010/02/26/weekend-sendoff-skeptical-yummies/comment-page-1/#comment-786 krakow Sat, 27 Feb 2010 03:06:47 +0000 http://newly-nerfed.net/?p=1742#comment-786 The CFIDS seem reasonably critical of the WPI for not providing enough information to others. I don't think they've been bad. They clearly don't want people to be too dismissive of a possible link with XMRV at this point, but they're certainly not telling patients to run off and get tested. One of the CFIDS roles is to represent CFS patients, so they've got to be a bit responsive to their preferences. The CFIDS seem reasonably critical of the WPI for not providing enough information to others. I don’t think they’ve been bad. They clearly don’t want people to be too dismissive of a possible link with XMRV at this point, but they’re certainly not telling patients to run off and get tested.

One of the CFIDS roles is to represent CFS patients, so they’ve got to be a bit responsive to their preferences.

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