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

[shannah]

From April 08th - 1/2 hr. long

http://www.whchronicle.com/category/episodes/

 

[Sasha]

Completely misread that - I thought it was "guests at the White House"! I thought we'd finally arrived!

Still, looks interesting - am starting to watch (it's 30 mins long).

 

[Doogle]

I would have liked them go for 2 hours or so before my brain would go foggy. Seriously, how can we encourage more roundtables like this?

 

[Sasha]

Well, now I've watched it and it was very good. Leonard Jason in particular got it over well, I thought. I've just attempted to leave an appreciate comment (I used the "contact us" thing because I couldn't see a way of responding directly to the video) but my message seems to be hanging. Anyway, I made the point that we'll only get progress if we get research money and I mentioned the WPI and Dr Klimas's Morton Fund.

 

[SpecialK82]

Great show, sitting down and talking about the issues, hopefully it will change some minds. Len Jason as usual was awesome. He not only knows what to say but says it so eloquently. Thanks to Llewellyn King, I hope he will continue to follow us.

 

[Wayne]

Thanks for posting this Shannah. I thought it was all good.

 

[leela]

Hah! I had the same misread--thought they were headed to Washington! And I too have had my letter to Mr. King just "hang."
Either way, great panel, and thanks for posting it--I would never have known about it otherwise.

 

[ixchelkali]

Thank you for posting this. It was just the lift I needed.

 

[omegaman]

(post edited due to request that this info remain private).

 

[beaker]

all I get is those color lines w/ the *station off the air* beeping. anyone else have this issue?

 

[OverTheHills]

That fooled me for a while, it goes on annoyingly for about a minute and then the programme starts. Its worth watching. OTH

PS I Love Lenny. He's no oil painting but he is sooooo clever and articulate.

 

[shannah]

all I get is those color lines w/ the *station off the air* beeping. anyone else have this issue?

It does that for the first 34 seconds or so beaker, then starts.

 

[invisible ME]

I can't seem to get past the halfway point of this program. Anyone else have this problem?? It just freezes up while ADM is speaking about it being "early days" of ME/CFS patient advocacy/organizing.

I was hoping to hear the rest of what she said on that note. While I have the greatest respect for ADM, I have to take issue w/that characterization. Unless by "early days" she means within-the-first-three-decades. :innocent1:

Seems like a great program though. Go, Lenny Jason, go!!

 

[Bob]

I can't seem to get past the halfway point of this program. Anyone else have this problem?? It just freezes up while ADM is speaking about it being "early days" of ME/CFS patient advocacy/organizing.

I was hoping to hear the rest of what she said on that note. While I have the greatest respect for ADM, I have to take issue w/that characterization. Unless by "early days" she means within-the-first-three-decades. :innocent1:

Seems like a great program though. Go, Lenny Jason, go!!

I struggled watching the whole video because of a very slow streaming speed, but it didn't stop in one particular place for me.

I haven't got much of a perspective on the history of ME/CFS patient advocacy/organising, because I've only been ill for 7 years, but it seems to me that since Judy discovered XMRV in patients, our community has galvanised, or grown stronger/louder, and become much more effective and vocal. I think things have changed massively for us even in the last year or two. So Amy's comment was a comment that I agreed with, but I know that I only have a limited perspective on the history of ME, and sometimes I think it might just be that I've got more awareness of the work that's going on, rather than there being more activity. I suppose it took me a few years to find other activists, and to find out about the ongoing research.

How do you see it all from your perspective, invisible?

 

[Bob]

Was anyone like me, and became a bit suspicious of the journalist from the Washington Post?
She seemed to me like she was exploding with the need to declare CFS a psychological disease that should be treated with CBT.
Maybe I've just become too suspicious and cynical these days!
But did she have an English accent? I couldn't quite work it out. If she does, then I'm sure my suspicions are confirmed! What is it with us Brits?!?

 

[leela]

She did indeed have an English accent, and while I didn't suspect her of bursting at the seems with psycho-steria, she did seem to me to have
an air of arrogance and judgment much of the time. That may be totally untrue but I was left with the feeling that she was on the panel as a sort of counterpoint-balance kind of thing.

 

[Bob]

She did indeed have an English accent

Ah, so it was an English accent... Well then, that tells us everything we need to know!!
Didn't she also say that she was a psychologist, or did I imagine that bit?

...and while I didn't suspect her of bursting at the seems with psycho-steria...

hehehe... Yes, maybe I was over-analysing her body language!

...I was left with the feeling that she was on the panel as a sort of counterpoint-balance kind of thing.

Well maybe that was a good idea, in order to stimulate robust discussion.
It's a shame that she wasn't more vocal about her beliefs on this occasion though, because that would have got Lenny fired up!

But maybe I'm being unfair. I don't actually know anything about her journalism. But I'll watch out for her work in the future, now I've seen her in person.


Anyway, it was a very refreshing and positive discussion.

It was very refreshing to have a patient, a researcher and a journalist sitting around a table agreeing with each other, and talking total sense in relation to ME/CFS. What a nice turn of events!

 

[leela]

Anyway, it was a very refreshing and positive discussion.

It was very refreshing to have a patient, a researcher and a journalist sitting around a table agreeing with each other, and talking total sense in relation to ME/CFS. What a nice turn of events!

Boy you said that right! Refreshment was certainly achieved and welcome! King surprised me with his compassion and understanding.

Regarding the body language etc, I will admit I was being, erm, diplomatic in my previous post, as I recognise this is a public forum; and while Miss British JudgyPants will not likely read this, I don't feel wholly comfortable jumping to conclusions based on my personal observations of her (attractive yet somewhat tense) face. :innocent1:

It's entirely possible she's just not comfortable being on tv or she had piles or something

 

[Bob]

King surprised me with his compassion and understanding.

Yes, he has a lot of intelligent insight into the disease doesn't he.

I was struck by what they were all saying about the level of feedback they get when they publish about ME/CFS. I'd not heard this actually confirmed before, even though I suspected it might be the case. No wonder Amy has carried on with the subject so enthusiastically.

Boy you said that right! Refreshment was certainly achieved and welcome! King surprised me with his compassion and understanding.

Regarding the body language etc, I will admit I was being, erm, diplomatic in my previous post, as I recognise this is a public forum; and while Miss British JudgyPants will not likely read this, I don't feel wholly comfortable jumping to conclusions based on my personal observations of her (attractive yet somewhat tense) face. :innocent1:

It's entirely possible she's just not comfortable being on tv or she had piles or something

hehehe... very diplomatically said! (I think!)

 

[invisible ME]

I struggled watching the whole video because of a very slow streaming speed, but it didn't stop in one particular place for me.

I haven't got much of a perspective on the history of ME/CFS patient advocacy/organising, because I've only been ill for 7 years, but it seems to me that since Judy discovered XMRV in patients, our community has galvanised, or grown stronger/louder, and become much more effective and vocal. I think things have changed massively for us even in the last year or two. So Amy's comment was a comment that I agreed with, but I know that I only have a limited perspective on the history of ME, and sometimes I think it might just be that I've got more awareness of the work that's going on, rather than there being more activity. I suppose it took me a few years to find other activists, and to find out about the ongoing research.

How do you see it all from your perspective, invisible?

Thanks, Bob. I will try to watch it again. Maybe I was having browser issues.

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." Just look at the wealth of information that some of the people on this forum (yourself included) hold.

Maybe I'm ranting. I really don't want to pick on ADM, but I couldn't help but feel a bit slighted for some of our fearless leaders who've been risking their health and/or careers for so long on our collective behalf.

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.

Seriously great program though. It's almost shocking to see.