Amy Marcus and Lenny Jason as guests at White House Chronicles with Llewellyn King

[Bob]

I would agree that XMRV has been a galvanizing force, for sure. I personally think that has more to do with the science than the patients/advocates. Which isn't to say we haven't stepped things up in response to this singular opportunity. But I can't help thinking of all the ME/CFS organizations, networks, newsletters, letters to the editor - not to mention Osler's Web, Cheney, Peterson et al. I mean, there have been a LOT of people working their butts off for the better part of thirty years to get the message out (all the while in extremely poor health), but no one was listening. And now they are listening, which is great, but this is hardly "early days."

Yes, I see what you mean.
And I agree, that it's the science that's made a big difference for us.

And yes, the journalist from the Post looked like she could barely restrain herself from calling us all a bunch of loonies. Probably sensed (and this is a real change) it wouldn't have gone over well in that company.

Looks like we all thought the same thing then!
Yes, it was nice to see that particular perspective in the minority, for a change.
If only that was always the case!

 

[slayadragon]

A transcript of this broadcast is available at CFS Untied, here.

http://www.cfsuntied.com/mediaWHC.html

The page looks weird at the bottom on my browser, but other people say it's fine. Maybe it's just me. If you also see it looking strange, please let me know.

Best, Lisa

 

[SOC]

Thanks, Lisa. I'm having trouble with video downloads and transcript is my only option for accessing this info, so I really appreciate the link.

 

[ixchelkali]

Yeah, I had the feeling the reporter was trying to be diplomatic, but it was really, really hard for her. Like she didn't want to come out and call us nutcases while she was sitting there with a couple of patients, but still...

So if we're being paranoid about her, we're all paranoid together. Mass hysteria, mass paranoia, what the hell. :innocent1: At the least, she seemed uncomfortable. But that was probably good; it added balance to the program, and brought out that viewpoint where it could be discussed.