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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

DR OZ TODAY (12/3) on CFS/XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Dreambirdie, Dec 3, 2009.

  1. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,039
    Likes:
    3,198
    N. California
    THANK YOU!

    I am so excited to see it... 90 minutes and counting!!!!!
  2. Sasha

    Sasha Fine, thank you

    Messages:
    8,039
    Likes:
    6,825
    UK
    Is this the video on Dr Oz's website?

    I was googling on XMRV (can't help it) and came across Dr Oz's homepage which features a still from his interview with Dr Donnica at the top and a ton of written information (on a quick skim it looks like good quality stuff from Dr D). The still is clickable but it didn't start a video as I expected - but this might be because I am in the UK. If you're in the US maybe it would work.:confused:

    For what it's worth, it's here! Perhaps someone in the US would give it a go and report whether it plays the video for them.

    Meanwhile, I suppose I'll have to wait for someone to put it on YouTube!

    So relieved to hear it turned out well after the whole "stretching" thing!
  3. _Kim_

    _Kim_ Guest

    Sasha, the video didn't work for me either. When I click on the picture it opens a new window, but that's all.
  4. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Thanks dr. Donnica!

    You did a great job!:d:d:d:d:d:d:d
  5. Sasha

    Sasha Fine, thank you

    Messages:
    8,039
    Likes:
    6,825
    UK
    Oh! Thanks for trying, Kim, that's all I got too. Oh well!

    I thought the text was very powerful - I hope a lot of people who don't have ME/CFS read it.
  6. Michael Dessin

    Michael Dessin Senior Member

    Messages:
    339
    Likes:
    9
    Ohio
    Cold Taste of Tears

    With all due respect, what you said makes 0 sense.

    Overall the show was a step forward.

    As far as exercise, NOOOOO!!

    It's not worth the risk and could put you in a severe permanent or very prolonged relapse.

    Mike
  7. Kati

    Kati Patient in training

    Messages:
    1,970
    Likes:
    1,285
    Just finished watching it- I found it a bit inflammatory or perhaps aggressing- but it may be how my nervous system is at the moment- The text and clips were"in your face" and images were changing all the time; the speed of speech was too fast for me and there was too much and yet not enough information all at the same time crammed in only 12 minutes of show-

    I am thankful for Dr Donnica and Gina to have stepped forward and tried their best to explain the disease and to Dr OZ to have given it a shot. Maybe it will stir the pot, so to speak and the population in general will start asking questions.
  8. Mercy

    Mercy

    Messages:
    22
    Likes:
    3
    I can see how you could interpret it that way. But I did not see his suggestion of walking to the mailbox as excessive. It isn't exercise in the way in which healthy people think of exercise--ie. high intensity, aerobic. Besides it was very clear that he understood how even that little bit of exercise is a real challenge.

    By the way, I am housebound and largely bedridden but I am convinced that the very small amounts of exercise I do have been vital in preventing deconditioning which in the past has further exacerbated my condition.
  9. Marylib

    Marylib Senior Member

    Messages:
    428
    Likes:
    11
    New Zealand
    for Katie -- whoosh, whoosh brain pain

    Yeah I can't watch those kinds of show, either. Too much brain pain. :rolleyes:
  10. greybeh

    greybeh Guest

    Will someone please let us know if it becomes available online to watch? :eek:
  11. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,039
    Likes:
    3,198
    N. California
    YAY! YIP-PEE----YA-HOOO-EEEE!


    ALL of the TALKING POINTS that Dr Donnica and I came up with prior to the show actually got on the show!

    1. CFS is NOT the same as fatigue or exhaustion, but rather a serious debilitating NEURO IMMUNE DISEASE.

    2. CFS affects btwn 1-4 million in the US, and causes MANY DISABLING SYMPTOMS.

    3. Recent research from WPI, the NCI and Cleveland Clinic shows 67 PERCENT of CFS PATIENTS HAVE THE XMRV RETROVIRUS. (a little blooper there)

    4. This is the "GAME CHANGER" that shows a biological basis for this illness, and proves once and for all that CFS is NOT "depression" or "all in your head."

    5. Now MORE RESEARCH IS NEEDED. We need to take this retrovirus as seriously as the other one - HIV.



    AND Dr. Oz did a very good job letting her talk! AND having compassion for those who have CFS!

    I am a happy camper today.
    :):):):p:p:):):):):):):):):):):):):):):):):):):):)
  12. Kati

    Kati Patient in training

    Messages:
    1,970
    Likes:
    1,285
    I think i am gonna crash just for watching it :eek:
  13. dannybex

    dannybex Senior Member

    Messages:
    2,176
    Likes:
    518
    Seattle
    I thought it was much better...he obviously felt the heat from all the emails(!)...but was troubled by some of his assertions (or perhaps he mis-spoke) like when he said (paraphrasing) "so five million of us have this but aren't sick and five million have it and are!"

    ???

    But overall, it was much better, and Dr. Donnica did a great job. I was really glad to see the patient there too -- one would have to be blind not to see the pain and torment in her eyes...

    THANKS DREAMBIRDIE!

    d.
  14. Martlet

    Martlet Senior Member

    Messages:
    1,837
    Likes:
    3
    Near St Louis, MO
    Missed it

    After a bad night, I slept the morning away. YouTube anybody? Please???
  15. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,039
    Likes:
    3,198
    N. California
    Hi Dan--

    No it wasn't perfect. But it was pretty damn good.

    And now I'm going back to dreamland. ahhhhhhh YES!
  16. zoe.a.m.

    zoe.a.m. Senior Member

    Messages:
    361
    Likes:
    17
    Olympic Peninsula, Washington
    Thank you Dr. Donnica (and not too bad Dr. Hairdo)!

    Normally all of the 28 Day Later freaky font displaying Chronic Fatigue Syndrome (!) and the flashing photos turning black and white would have put me off; however, with CFS being underplayed for close to 30 years, fear and panic might just get a better concept off the ground.

    I was impressed with Dr. Oz overall, and maybe he will now use Dr. Donnica for related matters and Teitelbaum for "fatigue."

    Dr. Donnica did an exceptional job as a very solid professional bringing the conversation back to where it needed to go each time. She did, in fact, get so many important facts across! I also personally enjoyed seeing an expert on who didn't fawn over Dr. Oz, who didn't seem entranced by being on his show or like they were about to fist bump! It's too bad the show edited out the mention of the lack of education for Dr.'s in this area--that would have been a great piece of info--but a little bit of a risk for Oz's "please the powers that be" persona.

    I also want to give a shout out to Gina--her story was incredibly touching and it must have taken a great deal to go before an audience and remain composed and articulate. Thank you Gina!
  17. Sing

    Sing Senior Member

    Messages:
    1,302
    Likes:
    422
    New England
    My Thank You Letter

    Here is my thank you letter to the show's producer, Judy Rybak:

    Dear Ms. Rybak,

    Thank you for producing a dramatic wake up call on the Dr. Oz show today, about CFS. Starting out with the video about XMRV was brilliant! Dr. Oz seemed really interested and compassionate. Dr. Donnica was clear, precise and informative--though too abbreviated, in my view, to convey more than a little idea of the whole symptom picture, treatment picture, etc. But for a short segment, it was outstanding! I hope you will produce more shows on this subject.

    I have had ME/CFS for nearly 15 years. The news of the XMRV discovery I felt like a seismic shift in my body--a real game changer on all levels. You wouldn't think people would be thrilled to know they might have a retrovirus, but most people I know with CFS are, because it means validation and potential help, finally. We already expect to be sick for life, as only a very small percentage "recover", and it is possible that such people didn't have the same illness.

    I hope there is a lot more publicity and a lot more scientific study soon to help those many of us who have suffered so much.

    Sincerely,

    Cecelia Blair
  18. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,039
    Likes:
    3,198
    N. California
    Thanks Cecelia for your letter. :)

    I am going to start a new thread for this, so people will FIND it and do as you.
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Well

    Well, I am surprised by your comments. He was on such a good roll until the word "exercise". I thought at the time... Oh my, the discussion board people will be mad at that. If only he hadn't said that last line.

    From a healthy person's perspective (or someone who isn't in the CFS loop, even if they have CFS) the word "exercise" has a different connotation than going to the mail box. It would have been better if he had used the term of "do some body movement".

    I do appreciate that he understands the challenge. But in fact, if it is that hard for Gina to go to the mailbox, as she seemed to say, then all of us in the loop know she shouldn't. Too bad Oz didn't understand that. If she had said, "It's hard," the more ideal response would have been. "Then at least stretch, even if you have to do it while in the bed, even if it is only for three minutes. Do what you can, but don't do too much."

    I also laughed when he said that. You could see the look on Gina's face. "Are you kidding me? exercise?"

    I also noticed Dr. Donnica nodding her head in agreement. (was she agreeing with Gina or Oz?)

    Mercy, you made a good point that the fact that Gina responded to "go to the mailbox" with "It's hard," something most people take for granted, then the message may be, "Hey, this really is debilitating for some people." And if so, that is a good message. And, Oz did say, "I know." (although obviously he really doesn't, he did try to show understanding) He didn't say, "Well, then the problem is you aren't doing enough. The more exercise you do, the easier it will be. You need to build your stamina." And that would have been the wrong message. So we can be thankful.

    One thing I noticed too is that he was asking about triggers. And evidently, the answer was edited out. Or Donnica didn't answer because he also asked many other questions in the same moment, like three questions at once. So she answered the others but not the trigger one. (no doubt, Mikovitz told him the answer.) But from a public perspective, that was not as important as the other parts they did include. From a scientist and patient perspective, that would be important.

    I thought they did a good job of cramming info in the time they had. And it was presented in a compelling way.

    Donnica was very good at slipping in the little details, such as (and men) in her answers. I could tell she had prepared for each possible question he would ask. And she had phrases prepared so she took advantage of each opportunity to answer his question, while sneaking in the details that the interviewer may not think is important, but truly is. Job well done, again, Donnica. You are obviously media savvy.

    uhhh, was there supposed to be a mention of CFIDS Association? OUCH!

    I think we should help Oz understand that the word exercise might not be the best word, giving the wrong impression. In fact, I would have rather he said stretching or body movement in small time increments. And, the point is, he just said it is likely a virus that you live with, your body must fight every day. Would you advise a person who is fighting off viruses, say the flu, exercise? No. You would advise them rest.

    I thought it very ironic that Donnica mentioned increase intake of salt (again, in the stuff she was saying fast to get it all in). And right afterward they had a segment on a man eating too much salt.

    I just love irony.

    I also thought Gina had a great story to tell. I also thought she looked sick. You could look at her and tell something wasn't right. In fact, my first guess just from appearance is that she looked like she had been in a car accident and had plastic surgery. I think this was good. Her response was slow and thoughtful. But it looked to me like she was having trouble processing his questions. I don't know how bad her cognitive problems are, but in the brief time she spoke and her looks and slow response, my guess is she is having trouble in that area. Maybe that is one of the reasons Oz was compassionate. When you ask someone a question that is simple and they have to think, and you see the struggle in their face, you become patient. It's one of the things that makes you realize... hey, this person really is sick.

    Tina
  20. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,229
    Los Angeles, USA
    Wow! I just saw the show. Dr. Oz presented it as a serious health issue that should alarm us all.The animation about how a retrovirus works was chilling. And he went further than most do. He spoke about this as a done deal. IOW, he didn't present it as awaiting replication.

    I would have liked a couple examples of worst cases and better symptom coverage. And the exercise comment lacked qualification. But on balance, I think this a media victory. Probably the best publicity to date.

    BTW, at several points in the show the sound dropped out. I wondered if they were censoring comment.

See more popular forum discussions.

Share This Page