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Group Letter for Dr Donnica re Oz show

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Marylib, Nov 12, 2009.

  1. Marylib

    Marylib Senior Member

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    I have no idea if this is the right place to put this:

    Per Dreambirdie, Dr. Donnica is to be on Dr Oz and has asked if there are any points we want covered that were not covered on GMA.

    If you want to contribute to a group email about this, please post here.

    That way, Dr Donnica will not be bombarded with too many emails but we will still get out point across.

    Marylib
  2. SeaShel

    SeaShel Senior Member

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    I jumped the gun and fired off an email to Dr. Donnica before I read the entire thread. Here's what I sent her, and her immediate response. Sheesh, I could get used to this being listened to by a doctor thing! :D

    The MCS issue most certainly isn't at the top of the list of problems, but it's forefront on my mind right now because of how limiting it's becoming on top of all the other limitations. I just feel it's something that needs to start creeping into the public consciousness. All those dang plug in and air freshener commercials are going to be hard to counter act.

    _____________________________________________________________


    From: Shelley L
    Date: Thu, 12 Nov 2009 14:23:39 -0800 (PST)
    To: <drdonnica@aol.com>
    Subject: Dr Oz Appearance

    Dear Dr. Donnica,

    I imagine you're getting inundated with email from all us PWC's, so I'll try to be brief.

    A point I would like to see getting more attention is the multiple chemical sensitivity problem. Although I don't have an official dx of MCS, I'm becoming almost housebound because of it. It's not just the usual suspects of perfumes, colognes, etc. It's hair products and laundry soaps and softeners and body wash, etc. Don't get me started on all the air fresheners and plug ins and all. I am having to change dentists because they refuse to not light the damn candle on the reception desk the day I'm coming in (and this is a lifelong family "friend"). Certain products are so toxic to me, I "flip out", others will put me right back in bed, cause a migraine, etc.

    I know many issues are just as pressing or more so, but since you asked, thought I'd throw my two cents in. Interestingly enough, Dr. Oz doesn't say it aloud on the show, but it is on his website, to not use the scent stuff. (I would imagine that's all about the advertisers).

    I have emailed and posted to my Facebook your GMA appearances, and from the bottom of my heart - Thank You Dr Donnica! YOU ROCK!

    Dr Donnica's response:

    Thanks for your input! I will try to work in a mention about MCS, but I don't know yet how much time I will have (or how much "control" I will have!!!). I will continue to do all I can to be a voice for PWC + those who love them.
    Best regards
    Donnica
    Sent from my Verizon Wireless BlackBerry
  3. bakercape

    bakercape Senior Member

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    things I'd like mentioned

    1)Description of severe cfs/bedridden individuals.
    2)There have been reported/ documented outbreaks of CFS ( example Tahoe)
    3) horrible response/ attitude by CDC/ horrible funding
    4) difficulty in proving disability to the Social Security administration leading to destitution.
  4. Dreambirdie

    Dreambirdie work in progress

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    Donnica Moore asked me about the forum and how to access it.
    I sent her the link to the thread I started DR OZ SHOW has contacted Donnica Moore.

    Hopefully she will join us! :):):) Please keep your eyes open to that.
  5. Marylib

    Marylib Senior Member

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    Dreambirdie

    I just wrote to her too :)
    Told her I was going to gather everyone's comments to send her. But maybe she will just prefer to read them for herself? That would be great too.
  6. shrewsbury

    shrewsbury member

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    things I'd like included:

    >introduce ME terminology ME/CFS

    >CFS bad name, like calling Parkinson chronic shaking

    >NOT= normal fatigue, extremely debilitating (he could poll the audience - how many tired? then say something like "now magnify that by 100 and add the worst flu and 100 odd other symptoms and you'll have some idea") ok ok I'll back off

    >>one of the quotes re how ME/CFS is more debilitating than cancer HIVexcept for final stages think one in Canadian definition and other by Klimas

    > main symptoms -See Canadian protocols
    (NOT sleep disturbances as Dr T said and Dr O repeated last time - that's #3)
    1. Fatigue: The patient must have a significant degree of new onset,
    unexplained, persistent, or recurrent physical and mental fatigue
    that substantially reduces activity level.
    2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate
    loss of physical and mental stamina, rapid muscular and cognitive
    fatigability, post exertional malaise and/or fatigue and/or pain and
    a tendency for other associated symptoms within the patient's cluster
    of symptoms to worsen. There is a pathologically slow recovery
    periodusually 24 hours or longer.
    3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or
    rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.
    4. Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new
    type, pattern or severity.

    The illness persists for at least six months. It usually has a distinct
    onset,** although it may be gradual.


    >other symptoms are from
    a)Neurological/Cognitive Manifestations: Two or more
    b)At Least One Symptom from Two of the Following Categories:
    i)Autonomic Manifestations:
    ii)Neuroendocrine Manifestations:
    iii)Immune Manifestations:

    >very brief history of definition - WHO - emphasize recognised as physical disease, not psychiatric since 19xx, Fukuda, Canadian, US + Canadian being adopted world-wide eg Australia and Scotland (verify facts)
    (not sure whether to mention US and UK have broadened without research base, to include fatigue and some forms of depression - probably too complex for a clear sound-bite???)


    >Maybe the difference between ME/CFS and depression - think woman in bmj diagnostic tips said it well

    PWC want to exercise but cant. If try will pay for it with PEM knocked out anywhere from hours to days to weeks to months if overdo

    People who are depressed can exercise, but dont want to. If they do, they will feel better.


    I think this is a nice clear sound bite people can get it we cant exercise or do more. If we do we get sicker, not better.

    >maybe the problem with some of recent research - not all studies clearly state definition used - but that is expected to change

    islandfinn:)
  7. misskoji

    misskoji Guest

    Thanks to everyone contributing here. And Dr. Moore, if you tune in here...know you are one of our HEROS!:)

    I don't have much to add, everyone here has great suggestions.
    I know her time may be very limited and she only has so much she can cover, and the editing...well let's keep our fingers crossed!

    The points I think are crucial-

    The varying degrees of symptoms, most stressed on the more severe and the differentiation between CFS and idiopathic chronic fatigue.

    I will echo what others put about outbreaks and the lack of CDC action, yes indeed!

    Lack of patient care and resources here and abroad...perhaps mention of UK psychological etiology theory being hogwash.

    My dream point (I'm only wishing here)-Dr. DeFreitas gets credit for her work.

    This is very exciting for sure!
  8. Koan

    Koan Be the change.

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    My thoughts:

    I just viewed Dr. Moore's GMA piece and she packed as much good information into each question as was humanly possible. And, although it was a short segment, I would wager she was given more time than the Oz producers will give her because Oz is not about interviews; it's about Oz explaining medicine to the audience - he is not an interviewer, he is the expert.

    The Oz show is going to have its own agenda - it will be written long before the cameras roll - and she will be "given" certain messages (or message, singular) to carry in her interview segment. Dr Oz will ask her very pointed question(s). She will be allowed to speak very little if he is true to form; he is a surgeon, he doesn't mess around and he's in charge. I'm sure the production team loves this about him because he delivers nice concise segments that don't need a lot of editing.

    This isn't long format interview like Oprah. He will not be exploring the issue with her. The producers will know exactly what they want to say, who will say it, how long it will take to say... and they will fashion the show accordingly. They are very tight.

    Dr. Moore will likely be confined to a tiny sphere.

    She did a great job on GMA. She answers like a doctor - fast, on point and her demeanour will signal to Oz that she's not wasting his time. She will get more in than someone who thinks and speaks more slowly. Oz gets impatient with slow talkers and takes over for them. This won't happen with her.

    I think we should weigh what really matters right now and not load her up with suggestions.

    She really knows her stuff and rang a huge number of bells on GMA.

    What if we consider what one vital piece of information, which she did not cover on GMA, MUST be included in the show? Is there something?

    I'm sorry to be Danny-downer (with apologies to Danny ;)

    GMA piece: http://www.youtube.com/watch?v=JFBY8UKMVp0
  9. Koan

    Koan Be the change.

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    The points she made on GMA in order and in response to questions. All points made with emphasis and urgency.

    67% with severe CFS have XMRV
    don’t know if causal or coincidence or piggyback or red herring
    there is a biologic basis for CFS - no more depression, etc.
    not the first piece of evidence
    susan verson called a game changer
    now what needs to happen more research from NIH CDC needs to get on it
    like the other well known retrovirus HIV
    retrovirus – integrates into host cell DNA and is forever unless treated with anti retro
    we know HIV can be passed to child in breast milk
    virus in bodily fluids
    don’t know how transmitted
    in prostate cancer
    people do not ordinarily give it to family members
    there have been outbreaks - don’t know why this is
    are there more than one virus?
    MUCH MORE RESEARCH NEEDED
    Don’t know if can be passed down other than from mother (fielding grandparents question)
    WPI family has daughter WCFS, very philanthropic
    WPI private funds & Nevada
    Cleveland clinic, NCI involved
    WE need CDC to see this is at least as important as swine flu
    Need to reproduce studies
    Find out how transmitted
    Need to develop a blood test
  10. gracenote

    gracenote All shall be well . . .

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    Thanks, Koan.

    Thanks, Koan. A most excellent review. Very helpful to see it written up this way.
  11. shrewsbury

    shrewsbury member

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    my 2+ cents worth

    Koan - what great points! oh what a voice of sanity you can be.

    I agree - Dr Donnica Moore was absolutley spot on on GMA. Never seen a sound-bite squeezed so well.

    On Dr Oz, she'll probably have less time. Is there any vital piece of info she didn't cover? Of course, so much of it depends on who the other medical experts are and what they'll be focussing on.

    I take back my wishlist of what should be covered (hopefully the whole show will bring out all the points).

    So, for me it would probably be the transmission question. As HIV is another retrovirus, it would easy for people to not understand the info and for a panic to ensue with all the negative implications. I don't want to be a pariah.

    I think emphasising that, while thought to be transmissable,
    > doesn't seem to be easily so,.
    > There is an extremely low rate of spouses and care-givers getting the illness.
    > ? the science?
    > ?maybe info on blood supply.?

    But so absolutley LOVED when she said on GMA that the days of trying to say ME/CFS is a psychological illness are over; dead; gone; no one can say it's all in their heads anymore.

    and getting across just HOW debilitating the illness is seems so important - the 2 quotes Klimas and Canadian defn work well for that I think or use some other quick striking analogy

    there's my 2 ( or did I cheat and it's 4? 6?) cents worth

    islandfinn:)
  12. Sing

    Sing Senior Member

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    Excellent initiative and teamwork--thank you all!

    1) I'd like her to add more about symptoms, as others have asked for. Give a more detailed piicture. Specifically:

    a. Cognitive and memory deficits like those of Dementia or Early Dementia or the kind of Dementia seen in AIDS patients, however phrased.

    b. The fatigue or PEM symptoms need several specific examples.

    c. Name MCS, IBS, Pain, Sleep Disorder, Low/Poor Endocrine functioning, Orthostatic Instability, etc.

    d. Multiple chronic infections such as herpes, fungal, etc.

    In other words, take the public idea of CFS forever out of the realm of tiredness and vague, inconsequential symptoms. Show how disabling it is by delineating more of the symptom pattern, why it is considered a neuroendocrineimmune disorder. Sketch them a map.

    2) The other aspect I found too weak (in an overall great presentation) was her emphasis on all that isn't yet known about what this XMRV research means. I felt her statements here were technically responsible but too unbalanced in favor of the many who are still strongly inclined to dismiss the potential meaning of these findings. The effect might be to postpone a day of reckoning in many people's attitudes, which those of us with ME/CFS could use now.

    Sorry this is so long. I find it hard to summarize and be concise!

    Thanks,

    Cecelia
  13. gracenote

    gracenote All shall be well . . .

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    Supplemental info?

    I'm sorry, I don't know much about what Dr. Oz offers, but in addition to his broadcast, does he provide supplemental information perhaps on a web-site or in written form? Since there probably won't be much time on this one show to cover everything we want, might it be useful if we (meaning all YOU brilliant media savvy ones) make sure he has the best info to draw from? Such as references to links, referrals, short summaries? Like I said, I'm not too familiar with what he offers, but am wondering if some effort could be made beyond this one particular broadcast. Just my thoughts.

    By the way, I think what you all are doing is absolutely amazing, brilliant, beyond the beyond. I shall do my part by cheering you on. Rah, rah, rah!
  14. jenbooks

    jenbooks Guest

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    Dr. Donnica Moore if you're reading this thread--you did an incredible job on GMA. I am confident you'll be equally brilliant on Dr. Oz's show. I have nothing to suggest because I know you understand all the issues thoroughly and you have a fluency and ability to translate for a lay audience that is remarkable. Thanks!
  15. kolowesi

    kolowesi Senior Member

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    for Dr. Oz show

    I was very happy with the GMA segment!

    One thing I would add is the difficulty of finding a GP (or non-CFS specialist) who believes this is a real disease, and the unfortunate result of being dx'ed with fibromyalgia or CFS in that no one ever looks further to see what might be underlying or comorbid.

    I thank Dr. Oz for pursuing this and Dr. Moore for helping educate so many people.

    Kelly
  16. DrDonnica

    DrDonnica

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    OK--I figured out how to register and please know that I am reading all of your posts. I am deeply touched by the positive feedback so many of you have given me regarding my segments on GMA Health as well as the input for the upcoming segment on the Dr. Oz Show. While I have a very high regard for Dr. Oz both professionally and for the amazing job he has done with this show in such a short time, I appreciate the fact that so many of you recognize that I will not be in the driver's seat of this segment! (whereas on GMA Health, I do a weekly segment & I have a LOT more input into the direction of the topic & the focus. . .if not the time!). They really do want to focus on XMRV and I want to focus on distinguishing CFS from "fatigue". I will do my best to "offer cover" on the issue of whether this is infectious, but the fact is, from a medical stand-point (which always has to be the first perspective that I represent), we just don't know. When pressed, I offer up the spouses/partners of PWC examples, including myself: my husband has had CFS since 1999, we've been sharing the same bed for 21 years, & I don't have CFS. . .although my son has been afflicted (and quite severely) since 2004. My daughter, OTOH, is a teen-age energizer bunny! I am in the camp of CFS believers who subscribes to the theory that there is probably a genetic factor which conveys a predisposition to CFS, but that this must be triggered by some sort of infection. I like Dr. Bell's analogy of viewing XMRV as the "puppet master". I will probably be much more negative about CFS in this segment than I was in the 2 GM Health segments: during that time, my son had been doing great for a few months & I was optimistic. Now he's been bedridden again for the past week & I'm pretty depressed again. I'm trying to decide whether to mention my personal connection to CFS or not in the Dr. Oz segment. The only reason I wouldn't (which is why I didn't mention this in the GMA Health segment) is because I don't want the segment to become about me or us; I want it to be focused on CFS as a disabling disease entity that needs much more research $$$. Thanks again for all of your support & I will try to check in again between now & next Friday. Another way to reach me directly for those who care to is via my facebook "fan" page for my book, Women's Health for Life (in which I did write a short section on CFS). I also post info about my other media appearances there if anyone's interested. I have also posted a few articles about my personal experience with CFS on my website at www.DrDonnica.com.
  17. DrDonnica

    DrDonnica

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    Great suggestion!

    Great suggestion--I know that the show has a website & I will ask the producers what additional info/links we can post. In fact, maybe I will ask if they can post an excerpt from the CFS section of my book. . .
  18. DrDonnica

    DrDonnica

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    Cyberthanks!

    Thanks! I'm blushing! But to all: I'm not going to reply to each post, but please note that I have read them and appreciated all of the input/feedback/support/ etc. I hope to do a good job representing that.
  19. Dreambirdie

    Dreambirdie work in progress

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    Hello There, Dr Donnica--

    I am so glad you found us! :):):)I have watched the GMA segment several times, and I agree with others that both the content and delivery is spot on target.

    The only thing that I hope you stress emphatically on the OZ SHOW, which you have mentioned in your fist post that you will, is that
    CFS IS NOT THE SAME AS FATIGUE OR EXHAUSTION, It is a SERIOUS DEBILITATING NEURO IMMUNE DISEASE.

    That was the big blunder that came through during the last OZ SHOW on CFS. So it would be essential to correct any illusions about this.

    Thanks so much for coming on. I am really thrilled. :):):p:D
  20. Dreambirdie

    Dreambirdie work in progress

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    Also... I wanted to let you know that I contacted Nancy Klimas this week as well, and she has written to the OZ SHOW too. I will keep you posted about any news regarding this. The WPI folks have still not made a final connection with OZ, though the Oz Show did express interest in speaking with Judy Mikovits. Will keep my eye on this.

    I think you, Dr Donnica, are the best choice to be on the show, but the more info they can get from the best people on the subject, the more beneficial it will be for all of us.

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