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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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ALERT: Teitelbaum to be on DR OZ SHOW this FRIDAY!

Discussion in 'Action Alerts and Advocacy' started by Dreambirdie, Oct 19, 2009.

  1. Jerry S

    Jerry S Senior Member

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    I would put Dr. Donica Moore on the wish list

    Good letter, ifinn! Maybe you could add Donica Moore as a potential guest. She did a great job explaining XMRV on GMA this morning.

    Jerry
     
  2. Koan

    Koan Be the change.

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    Hey all,

    I can't believe I'm still typing! Somebody stop me!

    You know, if Dr Oz includes a bit about XMRV, it could help to deliniate ME (aka CFS, aka CFIDS) as distinct from CF (no S). Much will depend upon production schedule and ability to get Oz in studio ASAP to do standup. They really should pull it from the sched and rethink. They are missing a great opportunity to make a really good hour of TV.

    It's good that WPI knows and contacts the Oz producers. It might help that viewers, even a few, contact them but I agree it's a looong shot unless it can be explained how it is in their interest to pay attention.

    This is a new show and no one knows if it's got legs yet. While Oz is very popular on Oprah, none know if people want to watch an hour on health every day.

    They will be fine tuning it as they go along. I think there have already been changes... fewer body parts, more pets.

    They are not bullet proof yet. They may still be quite responsive. Smart producers would spin this into an exciting episode. Dull producers will churn out a soft hour on the benefits of supplements for the fatigued masses.

    I don't know who's on his team. We'll see.

    Thing is, if we do nothing... we've done nothing.

    Peace out,
    Fried Koan

    PS IslandFinn ~ you are too kind, but then, it's the way of your people - all of them!

    ETA Great letter Finn; do you think they'll figure out we know each other? :D
     
  3. Koan

    Koan Be the change.

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    Oh no, it's me again!

    Jerry! The GMA piece is FANTASTIC!

    Now that, for sure, will get on the Dr Oz producer's radar.

    :D
     
  4. Marylib

    Marylib Senior Member

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    Good work Dreambirdie and all!

    I myself will be trying not to think of Teitelbaum; all I need is more stress...And the last time I saw Oz, he was saying that CFS could be successfully treated with supplements.

    So I will just hope for the best and thank you all for your media advocacy.

    Marylib
     
  5. Koan

    Koan Be the change.

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    My last, and I do mean last, email to the Oz team.

    Ok, I know you guys know everything I'm about to write here. (And, yes this is my second email to you on this topic.)

    I'm sure you have your finger on the pulse of health news, however...

    Don't be scooped on medical science by GMA:

    http://abcnews.go.com/video/playerIndex?id=8864348

    Because you were too committed to Jacob Teitelbaum's theories to which he clings, grimly:

    http://www.endfatigue.com/health_articles_f-n_2/Infections-xmrv_virus_found_in_cfs_patients.html

    in the face of good and exciting science:

    http://www.sciencemag.org/cgi/rapidpdf/1179052v1.pdf?ijkey=m3wzKT4yJqEyk&keytype=ref&siteid=sci

    This is a big story and Teitelbaum doesn't get it. I like the guy but he does have a huge vested interest in the status quo. Actually, the status pre Oct 8 2009.

    This is your first season. You can avert a blunder and do a really exciting show with breaking health news - the Teitelbaum show is already an anachronism.

    Peace out!
     
  6. shrewsbury

    shrewsbury member

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    thx - great idea - hadn't seen her - she was fantastic - clear, concise + has that TV charm. Whipped the 1st letter off as thought that was it for the day (but seem to be getting a bit addicted to this forum). May write a 2nd letter
     
  7. Koan

    Koan Be the change.

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    Islandfinn! Wait!

    I just sent the above with the GMA piece. Since our first letters were so alike maybe we should not send follow-ups that are very similar. I posted above what I sent and it really hinges on Donna.

    Donna!? My new bff. Actually, I can't remember her last name.

    :D

    ETA Ok, Donica, I can't remember my new bff's first name, either. :p

    EagainTA Your first was terrific! It's enough!
     
  8. Jerry S

    Jerry S Senior Member

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    Koan

    Breathe. In, out, in, out.....
     
  9. Koan

    Koan Be the change.

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    hey Jerry,

    Not to worry, I am. :)

    (we need a zen smilie!)

    I like feeling as though I'm doing something from my place here on the couch. I used to do a lot of stuff out in the world and I miss being a player and having an effect.

    This makes me feel energized - lying down as almost always - but energized and engaged which I love.

    The price is being fried and rather stupid but, yeah, as usual,

    I am meditating, too.

    Thanks for thinking of my breath!

    In gratitude to you, and everyone, I will post The 14 (rockin') Precepts of Engaged Buddhism in the Lounge.

    Peace out!
    Koan
     
  10. shrewsbury

    shrewsbury member

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    Koan - aw jeez - did I misunderstand? :confused: I thought part of why you posted the letter was so that brains like mine that are slower tonight could cc or piggy-back off your hard work. If I did get it wrong, I'm sxxxxy (you know - the 's' word - and no - not 'sexy' or 'sixty'). I did try to address that in my letter by saying that I had used your letter as a platform as I was tired.

    Love that you included the links for them to see.

    btw - waht does eta mean in this context? i only know estimated time of arrival - extra to add?? Ya know - before this forum I had never used a short form or a smiley face in correspondence -wheeee I'm living it up!:D

    Jerry - is that meditation or la manz?
     
  11. Finch

    Finch Down With the Sickness

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    Hey Koan

    Koan, you're keeping me up too late! You said you were going to stop two hours ago at least! I'm glad you haven't stopped, though. Your letters to Dr. Oz are really well done. So now I have to go check out the lounge? I think I'd better wait until tomorrow.

    Fried Finch
     
  12. Koan

    Koan Be the change.

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    My dear Finn,

    No, I didn't mean that! That was totally fine even if your brain and abilities are at least equal to my lumpen grey matter. I was just co-ordinating the Canadian contingents' strategy. Not my place.

    I just meant that we should not tip our hands by doing it twice in a row. But, you can reach right inside my head and take what you want so long as I can borrow from yours.

    I can only think you are sexy! I will not brook any other meaning! In fact, I'm feeling a little sxxxxy myself that I may have been clumsy with you.

    So we are both sexy. Well of course we are, we are Canadian!

    ETA = Edited to Add

    uh oh, once again I am spewing before noticing that there is a whole other page that I have not yet read.

    I wonder if I'm making any sense at all. Ah well, won't be the first time if I'm not.

    Much thanks to you, Finn, for being my comrad in type!

    Peace out,
    Koan
     
  13. Koan

    Koan Be the change.

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    Oh Finch,

    I'm so sxxxy! Go to bed.

    I will tie my hands behind my back until you are rested and returned.

    Well, I'll give it my best shot.

    Big smile to the Finch!

    Koan
     
  14. Jerry S

    Jerry S Senior Member

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    ifinn

    Your
    cracked me up. Gotta settle down and get some zzz's. Who knows what the tide will bring in tomorrow.
     
  15. jackie

    jackie Senior Member

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    Hey you guys! Since you're all obviously going to be up for a while....and I"M NOT!

    I was just thinking - and I hope (REALLY REALLY hope) this isn't a dumb idea.....what about a carefully written letter to one of those "dear Abby" type columnists "breaking" the news and filling in the most important details.

    The details and spin on the facts that we know are crucial to understanding. Sort of a heads-up for Chronics everywhere that may not have gotten the word, as well as the general public.

    You know, if I hadn't been a member of this site (and I actually haven't been one for very long), I'm not sure that I would have heard the news yet. No on I know has brought this up (but me!).

    Not everyone has access to a computer, monthly mag subscriptions or even more than a perhaps small local newspaper. MY little local paper has published ZIP about this - and I've checked everyday.

    But many folks flip through the paper and read the advice columns, right? And I know I've read letters from various groups representing other serious illnesses over the years.

    In fact, the open letter could STRESS the lack of readily available, easy to understand CORRECT information and the way ME/CFS has been sometimes mis-represented and misunderstood (in a most POLITE and POSITIVE way, of course!) and add in the newest info on XMRV.

    A sort of public service announcement - just the facts, maam! But better than a letter to the Editor.

    So....bad idea - ok idea? And WHO'S gonna do it???

    It ain't me, babe - 'cause I've got a date with Mr. SandMan

    Note to self: suggest this idea tonight - because you'll have forgotten it by tomorrow

    Anonymously........jackie
     
  16. Koan

    Koan Be the change.

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    You are so funny!

    Of course it's not a bad idea! It's a good idea! I nominate anonymous! Seconds? (No wait, that's what you say for cake.)

    Anyone care to second that emotion?

    :D
     
  17. Dreambirdie

    Dreambirdie work in progress

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    message from WPI media contact

    HELLO EVERYONE--I see a page worth or more of new posts since yesterdat afternoon, that I am just too fried to read (bad night sleeping---only 3 hours, going back to bed after this post). But I do want to thank the supporters here for their support, which is much appreciated. I got a note back from WPI media contact person yesterday eve, and here's what it said (below). I will check in later to see what NEW NEWS follows suit.


    Hello xxxxx,

    Thank you for the email. We have identified some producers for the show and will contact them first thing tomorrow. They are located on the east coast and I'll have better luck when I contact early in the morning.

    Thanks and I will keep you posted.

    Frankie
     
  18. Koan

    Koan Be the change.

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    Yay Dreambirdie, you done good!

    Go dream now!

    Shhhh!
     
  19. jackie

    jackie Senior Member

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    NO!.....YOU are so funny, Koan!

    I can't even SAY "INOMINATEANONYMOUS"!!! The letters twist around in my mouth before they can get out. Now, you say that ten times, really fast.

    I'm not the best one to draft a letter to anybody. And as much as I'd LIKE to give the right kind of devotion......I just can't SECOND that emotion!

    Seriously, maybe I can "steal" some of the great info from Cort's XMRV thread and cob together a generic letter. I'll try.

    But if anybody else out there reads this....YOU TRY!

    jackie.....(resting comfortably on her laurels, thank you very much, after her much heralded first doc visit after hearing the GREAT NEWS)
     
  20. jackie

    jackie Senior Member

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    Yikes!:eek: I was so busy cracking jokes I forgot to say "WELL DONE"! to Dreambirdie and Koan for All of their letters.:eek:

    So I echo, You done good, guys!:D

    I also hopped over to GMA and watched the video with Dr. Dannica. I was impressed - you could tell that she was making a big effort to get the really pertinent stuff out while she had the chance.:cool:

    Nothing was trivialized - and she was not going to be sidetracked or pushed off-topic. She gets a "You done good", too!;)

    Who's Donna?:rolleyes:

    With my warmest regards and happy to be me today......jackie:)

    (just now figured out the smilies!:eek: only took me 2 months!:p)
     

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