Concern was expressed in the CFSAC thread about a comment that Dr Jones had made at the CFSAC meeting: (http://www.forums.aboutmecfs.org/sh...C-meeting-online-Monday-9-4-EST-May-10/page16 )
Several of us shared that concern, so I emailed Dr Jones to request clarification. She has given me permission to post her response, and I have asked for a 1-line paraphrase - will post that if/when I get permission for that too.
Here is her initial response to me:
1) Wanda did not mean, "XMRV will be gone in a few months"
2) She appreciated the contact - rather than tons of emails - and wanted this posted, to prevent her being diverted from her core role. A good reminder to coordinate our emails to those that are helping us, so they don't get overwhelmed.
I started a new thread to make sure this clarification doesn't get lost in the lengthy CFSAC thread. Hope this helps!
Parvo:Retro smile:
Several of us shared that concern, so I emailed Dr Jones to request clarification. She has given me permission to post her response, and I have asked for a 1-line paraphrase - will post that if/when I get permission for that too.
Here is her initial response to me:
Oh, gosh, I was talking about the quirks of science and the media in general. Terrible choice of example on my part! You know, everything's all over the news today because of a surprising finding and very good press relations by the sponsor, and in a month it's totally gone away. Doesn't mean it wasn't true or isn't important--it's feeding the beast of the 24-hour news cycle. Scientists, too, are sometimes guilty of overstating the meaning of their findings, amplified by media eager for cures, miracles, solutions, etc., but with no follow-through or explanation of the limitations of knowledge.
I hope this helps, XXXXX. Thank you so much for reaching out to me directly to resolve this, XXXXX! I'd like to avoid the hundreds of emails that my HHS colleagues are now getting--I am having to divert time to respond to them, rather than work on the recommendations to transmit them to the Secretary--so feel free to share this message with the CFS community. I'm delighted that so many are using and paying attention to the videocast and archive. I just have to remember to be clearer when I'm trying to provide broader context! Wanda
The two take-aways:I hope this helps, XXXXX. Thank you so much for reaching out to me directly to resolve this, XXXXX! I'd like to avoid the hundreds of emails that my HHS colleagues are now getting--I am having to divert time to respond to them, rather than work on the recommendations to transmit them to the Secretary--so feel free to share this message with the CFS community. I'm delighted that so many are using and paying attention to the videocast and archive. I just have to remember to be clearer when I'm trying to provide broader context! Wanda
1) Wanda did not mean, "XMRV will be gone in a few months"
2) She appreciated the contact - rather than tons of emails - and wanted this posted, to prevent her being diverted from her core role. A good reminder to coordinate our emails to those that are helping us, so they don't get overwhelmed.
I started a new thread to make sure this clarification doesn't get lost in the lengthy CFSAC thread. Hope this helps!
Parvo:Retro smile:
