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Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
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Dr oz preview - "simple stretching for xmrv"

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by parvofighter, Dec 1, 2009.

  1. DrDonnica

    DrDonnica

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    I wouldn't say that they tied my hands. . .there were just ground rules and boundaries for the discussion. For example, with all due respect to the men with CFS (one of whom I'm married to and one of whom I gave birth to), this segment was intended to focus on CFS in women (although I did say "women and men" once or twice). This is true with all shows. This is not meant to put words into the guest's mouth, but to keep the segment focused, sharp & moving quickly. While it was a 10--12 minute segment (LONG for tv time!), it included me, a patient interview, a patient video package, an XMRV animation package, and the "tips" section. So it was jam packed.
  2. Dreambirdie

    Dreambirdie work in progress

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    HALLELUJAH for that! Ultra MUCHO BELLISIMO FANTASTICO!

    PS I speak no Spanish or Italian that I'm aware of. But I like the "music" of those words. English just didn't cut it.
  3. Samuel

    Samuel Bedbound with NO DOCTOR

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    Jill,

    Thank you for being on the forum. We are grateful every time a person who does not have ME/CFS, by whatever name, takes an interest and has a clue, as you just demonstrated.
  4. gracenote

    gracenote All shall be well . . .

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    The Cure Within

    A very interesting book is The Cure Within: A History of Mind Body Medicine by Anne Harrington. It was reviewed in the New York Times by Jerome Groopman.
    Faith and Healing. Jerome Groopman. The New York Times
  5. Marylib

    Marylib Senior Member

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    for Dr Donnica

    Thank you so much for your efforts. Hope your husband and son are managing alright and that Mom is not too overworked!
  6. Frickly

    Frickly Senior Member

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    Dr. Donnnica

    Don't worry about anything. You did your best and now it's out of your hands. Thank you for speaking for us. I do beleive that, one day, people will "get it".
  7. fresh_eyes

    fresh_eyes happy to be here

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    Dr Donnica, thank you so much for discussing all this with us. You don't have to take the time to do this, but you do, and it's wonderful. It's great having you on our team.:D
  8. fresh_eyes

    fresh_eyes happy to be here

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    Great recommendation, Gracenote. I'm going to buy this. :) The topic has been much on my mind.
  9. Alice Band

    Alice Band PWME - ME by Ramsay

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    Gentle stretching doesn't help me. Massage doesn't help me. They both make my physical health worth. I have ME.

    Everyone is different however, if he wants to recommend things that people can do and try then he needs to think more about the target group and the range of disability.

    It's like being told to "eat healthily",

    Well that's hard when so many "healthy" foods make me much worse - whole grains, green veges etc.

    It's stupid to recommend physical activity (even gentle stretching) to a group that is exercise intolerant.
  10. annunziata

    annunziata Senior Member

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    Motion intolerance

    I have tried to explain to people that even very simple movements make me feel sicker. Not tired, sicker. Most of the time, I keep relatively still. I can sometimes save up energy credits for something, but it's not a very reliable system. In the last few years, the parameters have shifted to allow me a bit more room, but the basic laws of the illness have remained the same. If I exceed them, the reverberations go on for days or weeks. I consider myself improved, but this means I no longer go into shock from the effort of sweeping the kitchen floor or washing my hair. The way I live still isn't even close to normal.

    I believe I also have classic ME, as described by Ramsey. A worsening of symptoms with even minor activity is the hallmark of this disease.

    It's maddening that exercise is pushed at us as if we really were averse to activity, when most of us are dying to do more. Prescribing exercise for this disease is barbaric. In an era of extraordinary high tech medicine, we get medical care worthy of about 800 A.D.
  11. annunziata

    annunziata Senior Member

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    I agree with Koan, this is a brilliant summary. I'm tempted to needlepoint a pillow with it.
  12. dipic

    dipic Senior Member

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    I think I would probably find it humorous if it weren't so sad. It's so true...
  13. Djembe

    Djembe Guest

    I must say that i wasn't overly impressed with Dr Oz, he comes across as a real clown, maybe his show is aimed at Hollywood. The two people asking him about the show where not too bright either "can you take a pill for it ?" you have got to be shitting me ! I hope the scientists in the US are a bit higher up on the evolution ladder than these monkeys.

    God help us.
  14. Mithriel

    Mithriel Senior Member

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    I crave exercise the way other people crave chocolate.

    To be able to go to the gym or go for a swim - heaven.

    It must be over ten years ago my children helped me out of my wheelchair onto a beach. We went to the water where it could lap over my toes. The feel of the water, the wet sand and the dry sand, I can still feel it. It was glorious.

    Mithriel
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    disappointed

    I am disappointed more emphasis could not be put on the other symptoms besides fatigue. But I do understand their need to focus. I understand also that fatigue is the most disabling part of the disease, so it is understandable that would be the primary symptom discussed. Sounds like the good doctor and the patient did get squeeze in some mention of other symptoms. Ok, disappointed, but I can accept it and understand it.

    I can't understand why they would tell you to not discuss post-exertional fatigue. If the focus is fatigue in relation to this disease, you, the medical expert (even more than Dr. Oz) should be able to give your expert understanding of this illness in relation to fatigue. Post-exertional is a major part, if not a previous to XMRV possible diagnostic marker for CFS. It just doesn't make sense to me that they are focusing on the fatigue part of it but take off the table post-exertional fatigue. That doesn't sound like editing for space and audience appeal, that sounds like squashing medical expert information contrary to what their message is.

    Well, maybe the hour-long interview with WPI helped. I mean, I have done interviews. And I am sure there was a lot of information given in one hour. I also appreciate their taking into consideration the physical limitations of the patient. (just adding evidence to the post-exertional fatigue problem. So they do seem to accept it, huh?) And any exposure that puts this virus with CFS is much better than the news coverage we have had for the last 15 years.

    We also have to realize folks, if you can remember what it was like to be healthy, it is unreasonable for us to expect healthy people to get a full understanding of our illness.

    Number one, it isn't their reality. They want to know enough to know if they should do something and if they are at risk. They have their lives with their interests and why should they care beyond that? Shows such as Dr. Oz are for those type people. Oh, it might trigger some mild curiosity in someone who doesn't have any personal interest. But they quickly move on to something else. They didn't become doctors or disease researchers because they don't have that much interest in the topic. That isn't bad. How much interest do we have in the study of ancient civilizations? Someone involved in that may feel some discoveries they found should have hour-long shows and the world should know because it affects how society developed. So let's remember that no one can know what it is like to be a black boy growing up in Harlem, except a black boy who grew up in Harlem. And no one can really know what it is like to have CFS, except..... And the public at large doesn't not care that much because it is not their reality. Same goes for people with CFS. It's not bad, it's just people must focus their time and mental energy in this crazy, information-filled life we have on earth. There are also many other diseases besides ours, all thinking there needs to be much more education of the public about their illness and more done to cure and prevent it. But, because of the outbreaks and other factors screams public health concern that the governments have obviously ignored because of bias, our cause for education and funding, I think, has more urgency and more validity, not to mention we have been the last on the rung for decades. But our voices are only a few with the multitude of other diseases needing attention, Alzheimers, Autism, just to name a couple.

    Number two, our illness is complex. It's not as easy as diabetes. "My body stopped producing insulin so I have to take insulin and watch how much sugar I take in. The insulin is needed for my body to use sugar. And I have to test my levels all during the day. And ultimately I may lose my sight and have circulation problems in my legs because of it." Compare that to our illness with immune system abnormalities, neurological problems, fatigue, metabolic abnormalities, endocrine system abnormalities, reactivated viruses, digestive problems, etc. As the good doctor said, it just doesn't fit into a ten minute segment. How much time would it take for any of us to get someone else to understand what is going on with us and what it is like to live with this illness? I venture to say, it would take fifteen minutes to just explain what it is like with all the symptoms, and an hour or more to explain what is going on in our bodies. Even the doctors don't want to treat us, why? Our visits take so long. And that is with a doctor that knows about CFS.

    So, the way I see it. The researchers are doing their part (those who are with us.) They have not slacked. I think it is up to us, especially since we can use the phone and e-mails and post responses after articles on message boards and blogs, to educate the world. We need to be working to get more media coverage. And I appreciate Dr. Oz giving us attention. We sure don't want to punish him after we called for him to do a show. It will not be perfect. But if you are frustrated as to why they can't get it all right, see Number one and Number two above. As one of my elders said in my congregation, when changing people, it is evolution not revolution.

    I contacted 60 Minutes by e-mail twice. I was told to put it in writing (letter). I have yet to do that. I still plan to. I also contacted a freelance writer who has her stories published in a Health magazine that is published out of Florida and one in Alabama. She has pitched the story. We will wait and see. (reminds me, I need to let her know of Dr. Oz airing)

    Michael Moore would be great.

    And I was glad to see the ABC News story, which I didn't know about. Now let's keep the ball rolling folks.

    Which reminds me, has anyone followed up on the blood supply being tested thing that was supposed to be in a report within a couple of weeks after the CFSAC meeting?

    For all the things we feel powerless about, for all we can't do, getting media attention and hounding the news organizations with multiple efforts to get coverage is something we can do for ourselves. Part of it is a numbers game. The more they hear from us and the more of us they hear from, the more likely they are to give us attention. Squeaky wheel and all.

    One more note, keep it civil. Don't make yourself sound neurotic with overreaction to their mistakes. In news media, mistakes are common. It's an information campaign we have here folks, not a blame game. We need the news media more than they need us. Let's work with them to get from them what we want. Let's not alienate them.

    Tina
  16. Michael Dessin

    Michael Dessin Senior Member

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    Same Old Crap

    Is anyone ever gonna have the balls to get on national TV and tell the truth about this disease or are they gonna continually sugarcoat this.

    Ok....he compares XMRV to HIV...does he really think we just have faitgue than?? Wouldn't he think a virus that acts like HIV would be somewhat dangerous?? What a joke.

    I know how this show is gonna go down :mad:

    Mike
  17. SeaShel

    SeaShel Senior Member

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    Excellent post Tina, thank you.

    Way back in the early 90's, I wrote a letter to a reporter at our local paper re: May 12 Awareness Day. She did an article on myself and another man in town, we got about a third of a page complete with a picture.

    She interviewed us together at my house, listened well and did her level best to write an accurate story. Things still came out somewhat out of context and not with the emphasis where and how we would have liked it. It's just never perfect. Period.

    I just realized that I don't think I had "filed" the fact in my brain that there wasn't a single letter to the editor afterwards. Not even from another patient.


    Shelley
  18. susan

    susan Senior Member

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    Dr OZ is entertainment

    I think what we are forgetting is Dr OZ is "entertainment" mostly watched for the stay at homers.......It is not a science backed show so it has to appeal to the housewives., the disabled,.retirees etc.......it has to please an audience and it advertisers. If that means they have to chop things around they will do so to make anything sensational and not upset conventional medical thoughts.....CDC

    I think just getting any publicity at this stage is better than none. Dr. Hairdo wants Stardom or else he would not bother doing such a fragmented approach on health issues and stay in his Operating theatre. Who else do we get to talk about it with a prominent profile and medical background that the masses love and believe in. Anything is better than nothing as this stage.

    IT IS JUST THE BEGINNING I BELIEVE.

    Dr Donnica well done with your efforts.....its TV and anything can happen and we know and understand that.
  19. Marylib

    Marylib Senior Member

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    Goodbye media, hello partron in D.C?

    On another thread I posted the Dr Donnica heard through the grapevine that one of Joe and Jill Biden's family members has CFS.

    The Bidens could do us more good than 1000 perfect media spots. Or "faces of CFS campaigns."

    I want to find a way to learn if this is true and if Jill perhaps would be interested in our cause.

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