1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by shannah, Apr 12, 2011.

  1. shannah

    shannah Senior Member

    Messages:
    835
    Likes:
    156
  2. Sasha

    Sasha Fine, thank you

    Messages:
    7,675
    Likes:
    5,824
    UK
    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).
  3. Doogle

    Doogle Senior Member

    Messages:
    196
    Likes:
    28
    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?
  4. Sasha

    Sasha Fine, thank you

    Messages:
    7,675
    Likes:
    5,824
    UK
    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.
  5. SpecialK82

    SpecialK82 Senior Member

    Messages:
    876
    Likes:
    454
    USA
    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.
  6. Wayne

    Wayne Senior Member

    Messages:
    2,183
    Likes:
    1,254
    Ashland, Oregon
    Thanks for posting this Shannah. I thought it was all good.
  7. leela

    leela Slow But Hopeful

    Messages:
    2,371
    Likes:
    2,736
    Couchland, USA
    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.
  8. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    263
    Long Beach, CA
    Thank you for posting this. It was just the lift I needed.
  9. omegaman

    omegaman

    Messages:
    39
    Likes:
    3
    (post edited due to request that this info remain private).
  10. beaker

    beaker CFS/ME 1986

    Messages:
    388
    Likes:
    567
    USA
    all I get is those color lines w/ the *station off the air* beeping. anyone else have this issue?
  11. OverTheHills

    OverTheHills

    Messages:
    274
    Likes:
    177
    New Zealand
    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.
  12. shannah

    shannah Senior Member

    Messages:
    835
    Likes:
    156
    It does that for the first 34 seconds or so beaker, then starts.
  13. invisible ME

    invisible ME

    Messages:
    44
    Likes:
    0
    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!!
  14. Bob

    Bob

    Messages:
    7,853
    Likes:
    9,601
    England, UK
    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?
  15. Bob

    Bob

    Messages:
    7,853
    Likes:
    9,601
    England, UK
    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?!?
  16. leela

    leela Slow But Hopeful

    Messages:
    2,371
    Likes:
    2,736
    Couchland, USA
    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.
  17. Bob

    Bob

    Messages:
    7,853
    Likes:
    9,601
    England, UK
    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?

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

    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!
  18. leela

    leela Slow But Hopeful

    Messages:
    2,371
    Likes:
    2,736
    Couchland, USA
    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 :D
  19. Bob

    Bob

    Messages:
    7,853
    Likes:
    9,601
    England, UK
    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.

    hehehe... very diplomatically said! (I think!) :D
  20. invisible ME

    invisible ME

    Messages:
    44
    Likes:
    0
    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.

See more popular forum discussions.

Share This Page