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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

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    Just in case there might be anyone around here who hasn't noticed...

    The DR OZ SHOW segment with DR DONNICA is today.

    There will also be an XMRV positive patient on the show, named Gina, who has been prepped by the WPI folks and according to Frankie Vigil (the WPI media coordinator) is "very media savvy."

    Prior to the show, Judy Mikovits was interviewed EXTENSIVELY via telephone by the Oz Show medical producer. She will not be on the show.

    So let's see what they do with this.

    Please leave your impressions and thoughts on this thread. Maybe we can even send him the link.
  2. Dreambirdie

    Dreambirdie work in progress

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    And please DO send the segment producer, JUDY RYBAK, a comment, as recommended by Dr Donnica.

    thanks!
  3. gracie

    gracie

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    I thought the it was quite good. I am very satisfied and already wrote a thank you e mail to the show
  4. Patient 2

    Patient 2

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    Well I think it was much better than the last segment with Dr. Teitelbaum! I liked that it was in the beginning of the program and that they had a patient talk about dealing with difficult doctors. Oz seemed to express genuine concern towards her struggles.

    I didn't care for them stating that they found XMRV in 95% of patients. The science study only found 67%, so they are quoting post study results which were not published. Also, they focused only on few symptoms and didn't say anything about other infections that could be present in cfs people. But overal i thought it wasn't that bad...
  5. KC22

    KC22 Senior Member

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    What a difference a day makes!!!

    Yes, this segment was so much better than the last CFS show.

    He let Dr. Donnica speak which she was precise as always and gave good comments. Even when he asked her about diet, she started with saying that really no diet will cure this, but always eat a healthy diet, etc.

    She also stated that there isn't any real treatment, but that there are HIV drugs that are being looked at as a possiblility.

    The patient, Gina, did a great job, too. They showed her before life and her present life. She was very credible and accurate. Every time they panned to the audience, there was a look of sympathy or incredulous when talking about the doctors who sent her to a shrink.

    Actually, Dr. Oz gave a good graphic explaining how a retro-virus gets into our DNA. It helped me understand this.

    I agree with Patient 2, I wished he had used the 67% number, instead of the 95. The 95% came with the antibody test which isn't offered yet.

    Even Dr. Oz seemed very calm and compassionate. I will definitely write the show and thank them for doing a more accurate account of this disease.
  6. Dreambirdie

    Dreambirdie work in progress

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    WHEW! I am SO GLAD to hear these positive comments! :):):):p:)

    The show isn't on here until 3 pm, and I look forward to seeing it now!
  7. _Kim_

    _Kim_ Guest

    Oh how I wish I had a TV to watch this. I hope someone uploads it to Youtube.
  8. Dreambirdie

    Dreambirdie work in progress

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    FUNNY! ;):):) I just sent you a PM hoping you could youtube it.
  9. JillBohr

    JillBohr Senior Member

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    I posted on the Dr. Oz preview

    thread but I thought I would add here that it was a great show. Dr. Donnica did a terrific job and so did the patient! I have no idea how to post it on youtube but I hope somebody here can post it so that those without a TV or just unable to watch it will be able to see it.
  10. KC22

    KC22 Senior Member

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    One other thing..

    At the end, he did add in the exercise. He looked at Gina and said any amount would be helpful, even if you can just walk to the mailbox.

    Gina looked at him a little overwhelmed and I think she said something like " I try." Again, I saw a look of compassion.

    The show comes on at 9am here, but I DVR it because I don't get up that early.:)
  11. Hi. Well really the % rates don't matter, because you either test positive or you don't. It's the accuracy that matters, and they've already said the new test coming out has very high specifity. It's impossible we'd all test positive for XMRV in droves, because we're all unexplained sick people - so the cause could be anything.

    It's a reality thay many people on this forum and the world (including me) may well be dissapointed in 2010, that they never did have neuro immune disease, and were told wrong. Naturally these people won't test positive for XMRV, and then can chose other avenues of help.

    The 67% detection rate was their first test used in early 2009 (used in SCIENCE) that isn't going to be the final test that health agencies will use - so why refer to it?.

    If a preliminary test for diabetes only had a 67% detection rate, and since then I refined it and got a test out for diabetes that anyone can use around the world, (as the antibody test for XMRV will be) then I'd not refer to the previous less accurate one. This is all they did here.

    Currently on a research basis, VIPdx/WPI are offering the lower detection rate test (effectively old technology), insurance companies and doctors offices won't be using this test as 'proof' of neuro immune diease, they will wait for the finalised clinically validated test in 2010 - the antibody test, which is running at 95%. Hence they mentioned the 95%. Makes perfect sense. We are all hobbyists on here effectively, having to be our own doctors. Doctors will ignore the XMRV test until it's 'official', it's not yet the antibody test is not available. It's pointless the WPI/VIPdx linked people refer to 67% as that's not going to to be the test the general public have to prove XMRV and XAND.

    The refined version that is more sensitive and uses a different method of detection (antibodies) will be the final test with a higher detection rate.
    It's only logical that they explain that they now have a diagnostic test for this disease, and can finally seperate explained neuro immune disease, from unexplained CFS.

    (It's like saying in January I scored 67% in a math examination, and now with tutoring in September I can get 90%. If someone said what scores can you get in math, you'd not refer to 67%, but the latest ability you have. That's not a problem). Especially if examinations take place after September.

    95% is the latest ability they have, the public just don't have access to it yet - but will do in 2010.

    Everyone benefits, including the people without XMRV.
    They can carry on doing what they do, and the people with brain damage and cellular damage can go see a doctor and try not to die of cancer/heart failure. That's win/win situation.

    Everyone benefits, it's incredible to me that misdiagnosed patients (including me) may be told they no longer have ME/CFS, but a new human retrovirus. Quite amazing.

    If you're XMRV+ and ME/CFS is not announced as an infectious disease - then you don't have ME/CFS but an XMRV infection, and that is wonderful news.

    Even if the detection rate of CFS patients testsed was 0.1% it's wonderful news, because then you have evidence of an inflammatory immune supressive state in your body, and can get help.

    It's the specifity that matters (accuracy), and they've got it very high indeed.
  12. Koan

    Koan Be the change.

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    It was good!

    Both Dr. Donnica and Dr. Oz did a really good job.

    Dr. Oz was quite grave and was pushing the seriousness of the condition. He did say that exercise was important but did not say it would cure ME/CFS, only implying that even a very small amt. of exercise - walking to the mailbox - was important to help keep it in check by which I think he meant that it was important not to become deconditioned but it wasn't clear. While this betrays a lack of understanding re PEM, which was not mentioned, these comments would not have been out of place in the discussion of any serious illness - he just doen't seem to understand the fine points of PEM. That's ok.

    Dr Donnica was terrific. She packed every answer with information and addressed every comment which was not on point within her answers. Very impressive. She clearly knows both her medicine and her medium!

    The graphics were pretty cool. They used "scary" music to set the mood for contemplating a retrovirus loose in the community.

    In my view, this was about as good as we could expect any short segment on XMRV to be. There were some small quibbles - over emphasis on fatigue, as always - but, on the whole, these were far outweighed by the things they got right.

    Dr. Donnica, when responding to Dr Oz's question about memory problems, said that it was, "not forgetting where you put your car keys, it was forgetting what your car keys were for" which I thought was brilliant and so evocative of the fog.

    Congrats Dr. D and thank you Dr. Oz.

    peace out,
    Koan

    ETA I don't want to damn Dr. Oz, or his producers, with faint praise. He was really excellent. He addressed with the patient, who also did a fine job, the whole issue of not being believed in a most compassionate way. He presented the science in an engaging and dramatic fashion. He is a diet and exercise guy, which is not surprising given that he is someone who deals daily with sick hearts which we all assume is a diet and exercise issue, but he only mentioned those things in passing. They did an excellent job of covering the news story of XMRV and giving a good, if of necessity incomplete, overview of ME/CFS.
  13. SDD1244

    SDD1244 Guest

    I can't wait to see the show... it airs here in a few hours. I just read Dr. Donnica's 'What is Chronic Fatigue Syndrome and How is XMRV Related?' on Dr. Oz's website and can't thank her enough for clearing up all of the misconceptions about CFS.
  14. anne

    anne Guest

    I then take back every "Dr. Hairdo" comment I ever made! It sounds like it was the best that could possibly be hoped for. And I agree that they should get as many letters about a good segment as they got about a bad one. Dr. Donnica sounds like she was just brilliant. Forgetting what your keys are for, indeed.
  15. Dreambirdie

    Dreambirdie work in progress

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    All this sounds GREAT! I am so looking forward to seeing it.
  16. Koan

    Koan Be the change.

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    There was a montage of shots at the top of the segment in which a lot of people were sitting at office desks, yawning. That is unfortunate as it does play into the working wounded stereotype of ME/CFS leaving out the most severely affected patients.

    I do wish they had skyped with someone who was homebound to address this, but, as I said earlier, these are quibbles. During the part of my illness where I was able to work and just felt like poop all the time I would have found this patient represented me very well. She said something about not being able to take time off work, as one could with the flu, because she would not recover and she had to carry on. This does leave the impression that it is always possible to carry on and that simply is not the case.

    My last comment is that in the opening montage sequence they appear to have a short clip of a doctor about to hug a patient's head - sort of clutching it to her bosom which I thought was very funny but it goes by very quickly and I don't think most people would notice. Maybe the doc was really trying to smother the patient :D
  17. jackie

    jackie Senior Member

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    Hi guys! Haven't seen it yet (am on so.cal time)...but I did read Dr. Donnica's "preface" article on Dr. Oz's show site.

    I've become used to feeling NERVOUS as I begin to read any media info re:CFS...but this time I was very relieved!

    She did a great job...so good, in fact, that I felt comfortable recommending it to a few family members!

    Also, the analogy (in the actual show) about "losing your keys versus not knowing what they're for" was very interesting.

    This was the same example my Neurologist gave me when he was trying to "convince" me that I had MCI (a pre-dementia condition) and needed to start treatment with Aricept/Namenda...rather than CFS-caused cog/memory problems!

    And trust Koan to make me laugh! There are MANY times when I wish somebody would just smother ME...and put me out of my misery! (athough not by clutching me to their bosoms!?:eek:!)

    jackie:cool:
  18. JillBohr

    JillBohr Senior Member

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    I will repost my comments here.

    It was much better than I expected. Perhaps I lowered my expectations after seeing the "let's exercise and get better" preview but I thought the show was very well done. I loved Dr. Donnica's (and men). She really wanted to make sure that the the audience knew that men get this too. Whenever I see or hear her name now, I will always visualize (and men). Dr. Oz did a good job explaining what a retrovirus is (trust me, people really have no idea) and I did like the visuals (sorry, I am so American and like my visuals). He also said at the very beginning and emphasized that a good nights rest does not overcome your fatigue the next day. Now I am paraphrasing here and he explained it much better than I just did. The point is, he did a good job explaining that this is a serious illness. Dr. Donnica and the patient were brilliant! In such a short period of time, they did a great job. When I heard the patient, it was almost exactly what my aunt and sister-in-law went through.

    I really do hate American television that tries to discuss topics such as this in sound bites and always feel obligated to present some simple solution to the most serious of problems. I lived in Europe for 11 years and I do miss their in depth documentaries they showed on various topics. Perhaps the BBC will air one on this virus in the near future. I urge all of you to contact the BBC and request that they do so. Maybe, just maybe, our local PBS stations may pick it up and our local and national commercial TV stations will run with it.

    I also wanted to add that when Dr. Oz did suggest going to the mailbox to get the muscles moving, you can see that he felt guilty even going there. It was much different than how he presented it on the preview.
  19. Nielk

    Nielk

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    I was pleasantly surprised too with the 12 minutes segment. It pressed in a lot of information and Dr. Donnica was great! Very informative and to the point and I also noticed and liked her "and men". I was happy to see that he didn't trivialize it at all. Made it sound like it's a very serious dangerous situation for which we need to find a cure.
    I think that people who were totally ignorant about cfs, will take it seriously now. (I hope)
    Of course, I would have preferred him leaving out the element of exercise or at least explain the dangers of it back lashing and aggravating the patients' conditions.

    Nielk
  20. Mercy

    Mercy

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    I am grateful and appreciative for Dr. Oz's program on XMRV. He was clear in his explanations, his guests were excellent and he showed a great deal of compassion. It was obvious from the highly empathic faces in the audience that he and his guests had adequately conveyed the seriousness of this horrible illness. I thought the way he mentioned exercise--that any amount of exercise, even a walk to the mailbox is vital to in fighting the disease--actually emphasized the true debilitating nature of CFS. It is so difficult to convey how debilitating the fatigue component of CFS really is. And suggesting to the audience that a walk to the mailbox is very difficult for a CFS sufferer must have helped put it into perspective for audience members who think they are tired or think CFS is all an exaggeration.

    I also love how he emphasized how devastating it is for us to told by doctors that we to blame, that it's a "hysterical woman's" condition, or that we are depressed. It seems to me that that part of the segment will help people to recognize how devastating it is for us to be disbelieved by our doctors, our families, and our friends.

    More than anything I hope that studies replicate the WPI data and that XMRV turns out to be the culprit in CFS. Even if XMRV does not pan out, I believe this program goes a long way in helping people understand the nature of CFS and the horrible impact it has those of us who suffer from it.



    Kudos to you, Deambirdie for all you did in getting this program on the air. :D

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