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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. Finch

    Finch Down With the Sickness

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    Thank you Dr. Donnica!

    Dr. Donnica,

    Thank you so much for joining us here. You've been a hero to me since your first Good Morning America CFS interview. Now we know that you're also a real person and that you have real personal connections to this illness. The fact that you're willing to share with us and listen to our ideas is extremely touching to me. I'm sure you know that most of us feel a disconnect from the rest of the world due to our illness and the invisibility of it (or of us, if we're among the most severely affected) to most everyone else in our lives.

    I'm saddened to hear of your son's recent "crash." I hope this one is brief. How amazing is it that he obtained a perfect score on the math SAT while dealing with CFS? Hooray for him! He must have had to work very hard just to be able to sit for the test. I know the toll it took on me, and I was healthy at that age.

    It sounds as though the outcry of many here has actually been heard by the Dr. Oz show. I know you were suggested by several people as a good choice as a guest for a CFS segment. Here's hoping you have a chance to get your important points across in that venue. If anyone can do it, I know it will be you.

    In addition to all the very important suggestions so far, I'd like to add that the notion that CFS is a woman's disease now needs to be put to rest. You know better than anyone that is simply not the case. Even if more women are affected than men, there are obviously a lot of men right here on this forum who have CFS. From the little I've seen of the Dr. Oz show, it does seem to be a women's show, and he's playing to that audience. They need to know their fathers, husbands, brothers or sons can become ill with CFS as well.

    Once again, thank you for taking this on for us, and thank you for coming here to talk with us. This is a great bunch of people, and you can find support and understanding here. Your presence and your efforts are much appreciated.

    Regards,
    Finch
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    While

    Dr. thanks for responding here.

    To answer your question... I am a news reporter. Yes, you should disclose that your husband and son have it. It could be taken two ways: 1) your biased and can't be trusted or 2) You know it as a doctor and in day to day living with it, so you are more credible.

    This show is not intended to be helpful to other doctors. It is for the public at large. In my mind, they will add more credibility to your words if you can add the personal experience with the professional knowledge. Not to mention, it makes it more interesting. But you may have to discuss this with the producers.

    But full disclosure is my reporter's motto, then let the public draw their own conclusions.


    Secondly, a quick way to describe it... I got sick and tried to explain it through symptoms. But I found people couldn't relate, just as many doctors can't relate. The words don't adequately explain what it is like. One day, I described it this way: I have immune symptom issues similar to someone on chemo (causing fatigue and intestinal problems), and hormone problems like I am in menopause (causing hot flashes and irritability as well as other things) and memory problems like I have Alzheimer's. (Of course, the inability to learn and problems doing math is different than Alzheimer's, but it does give a general idea.) And I have them all at the same time. This helped people to understand because they know what it is like to have these other problems. It brought unexpected sympathy and an understanding that I may feel very sick even though I look well. And it was exactly what it was like in my case.

    Also, instead of trying to list all the symptoms, maybe you could just say the number of symptoms and that someone with this illness may have any of a combination of these symptoms and not everyone has the same list and it changes with stages. (Here you might throw in why it is hard to diagnose.) I never had swollen lymph nodes. I don't have chemical sensitivities or allergies. I don't have anxiety. But what helped me most to conclusively know I have CFS was not only the severe fatigue and cognitive problems, but the association with vasovagal hypotension, a condition that has caused fainting spells since I was a child. IBS, tinnitus, TMJ, easy-bruising, vertigo, light sensitivity, hot flashes, sound sensitivity, out of breath and muscle twitches are a few symptoms not generally discussed, but it might be the a symptom that helps someone say, "That is me." I know you can't list all of them. But I don't think we need to list the major five or so and leave it at that because some people may say, "Oh, I don't have swollen lymph nodes, so evidently that is not what I have." As we know, this is not like the flu where everyone who has it has the same symptoms. Somehow, if you could get that across, that would be great.

    Also, last point... While everyone here is discussing the need to get across how severely disabling the disease is, I think it needs to be made clear that not everyone with CFS is that disabled. Yes, the severely disabled are not seen because they stay home and the public needs to know of the many losses this disease causes. If they do get out, it is after days of rest and they don't look sick. So the disability is invisible. But I had a virus or multiple viruses one stressful year. I then started having extreme symptoms with my period: extreme headache, hot flashes and severe fatigue. Over the next three years, I changed up hormone treatments while my symptoms crept in to more and more days of the month. All the while, I had other minor symptoms I dismissed as age or working too hard. Then I plummeted. During those three years of gradually getting sick, I might could have avoided the plummet had I known what I had and stopped my extremely stressful job. So I don't judge people as not having this disease just because their symptoms are not as severe as mine or others. There is a range. And the public needs to know that.

    Tina
  3. starryeyes

    starryeyes Senior Member

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    I just really want to THANK YOU Dr. Donnica for all you are doing to raise awareness about CFS/ME. You Represent!!

    Thank you Dreambirdie for all your hard work on this and Koan, it's been enlightening as usual listening to you. :)

    Everybody has great suggestions here and I have nothing to add.

    Go Dr. Donnica!!:D

    tee
  4. Sing

    Sing Senior Member

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    Response to Tina

    Dear Tina,

    What an awesome summary and good ideas about communication. I was also so interested in your experience. (I don't have swollen glands either. Dr. Byron Hyde doesn't see those as a definitive characteristic, FYI.) What I wish is that you too get an article out to the public.

    Thank you for your good communication. Dr. Donnica and all of us are the beneficiaries.

    Cecelia
  5. KC22

    KC22 Senior Member

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    Dr. Monnica

    We are all thrilled that you are going to represent us to the Dr. Oz community.

    In the beginning, your name was at the top of the list. Many had seen the GMA segment and were very impressed. The fact you answered the called is wonderful and we thank you so much.

    I have nothing more to add to the above lists, so I wish you Good Luck on the show and know we will all be watching.

    Thanks again for giving us hope!!!!:)
  6. Finch

    Finch Down With the Sickness

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    Signs and Symptoms

    One huge problem with Dr. Oz's description of CFS the last time was that the signs and symptoms he listed were way off base. What I heard from him was that, in addition to being exhausted, people with CFS tend to have weight gain, loss of productivity, and depression. The only one he got right was loss of productivity, which is a result of being sick, not a symptom. Many people with CFS struggle to maintain their weight. Many people with CFS do not have depression in spite of how miserable they feel.

    It actually surprises me that I seem to feel more happiness than a lot of other people I know. Of course I feel depressed at times, but it's not something I suffer from regularly, and I felt depressed at times when I was healthy. I don't think it would be normal not to. I don't worry about the little things that cause healthy people so much agony. I know what's worth worrying about and what isnt. So depression and weight gain are not universal the way Dr. Oz represented.

    The other thing he said was that if you're exhausted and you can't sleep, that's when he'd think as a doctor that you probably have CFS. During my first stage of CFS, all I could do was sleep. The inability to sleep came months later.

    In short, if I'd been in the same place I was in the beginning of my CFS experience, and I'd seen that segment, I would not have thought "that is what I have." I'd have thought I had something much more serious and scary (which, of course, I do). Dr. Oz needs educated as to what this disease really is.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes

    Yes, I lost weight. Although, I don't know for sure if it was from my treatment or the illness.

    I went down to 93 pounds. I asked my doctor how low is so low I should be concerned. He told me to drink Boost three times a day and eat three full meals and a snack. He said he was more concerned with how I felt.

    And, for the good doctor, you might could say something like.....

    Many patients describe symptoms similar to someone in chemotherapy, menopause and the early stage of Alzheimer's, all at the same time.

    As for me doing an article, well, I write for a small town newspaper that is much more interested in who spoke at the Chamber of Commerce meeting and how the high school football team is doing than this big issue. We don't have a specialist for this illness in Birmingham, Alabama. Patients with this either see a GP or go to a rheumatologist.

    I did e-mail 60 Minutes. They responded saying I needed to send a letter. I plan to do that.

    I just e-mailed a feelance reporter I know whose profile says she reports on medical news. We'll see if she is interested and if she can get a buyer.

    Tina
  8. Sing

    Sing Senior Member

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    For Tina

    "I did e-mail 60 Minutes. They responded saying I needed to send a letter. I plan to do that.

    I just e-mailed a feelance reporter I know whose profile says she reports on medical news. We'll see if she is interested and if she can get a buyer."


    Yay Tina, that is the spirit!

    Cecelia
  9. shrewsbury

    shrewsbury member

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    frontline or 60 minutes

    yay tina. :):):):):):):)

    I don't know much about american "investigative" tv programs, but the thread here was discussing

    >keeping journalists up to date with the research so that they were informed when it came time for them to write

    >which tv programs would provide the best coverage of the topic

    I think most thought frontline would be great, and there were some reservations re 60 minutes.

    Anyways, thought you'd like to know so that you could look at the thread and see others opinions on the different shows.

    islandfinn:)
  10. shrewsbury

    shrewsbury member

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    DrDonnica re temporary cognitive difficulties

    a comment re:brain fog, short term memory and other cognitive difficulties.

    I like the early onset Alzheimers analogy as most people seem to get that, but I think it's so important to stress that for us it is not permanent, "we" are still there. Brain problems come and go and we learn to do the things that need our brains when they're working.

    People with Alzheimers are losing their mental functioning permanently and get put away "for their own safety" or because their primary caretaker can't handle anymore.

    islandfinn:)
  11. Frickly

    Frickly Senior Member

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  12. August59

    August59 Daughters High School Graduation

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    This is a personal thing that will not get out of my head and I mean personal as I know of 2, maybe 3 people that are homeless people. The ONLY reason they are homeless is because thet have lost everything they have due to CFS.
    They were making good livings and leading good lives. They lost everything they had including there families, friends, house, cars and now they live in shelters or on the streets. A couple of them get disability checks, but they are so small they can't afford a very small 1 bedroom apt. One of them finally got a government apartment, but he has 4 dead bolts on it and will not step out of the apartment unless it's daylight.
    None of these people to this day drink, smoke or do any type illegal drugs. It doesn't matter to our government that they are sick. They are just a statistic now. They are homeless (due to CFS).
    What I really wonder about is - How many of the homeless people in this country are homeless due to CFS. It might not be many, but it could be an enormous amount. How many people in the US have CFS? Do you really want to know what that number is? It's a lot more than we think!
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    As

    as for the homeless with CFS, I wondered the same thing.

    And for the good doctor....
    I agree that somehow, in all the tips you have been given here, would be nice if you could include that people who get this disease may be CEO of a company and three months later can't get out of bed, just to emphasize that it can hit anyone and is not a disease of lazy people. Smart people, accomplished people can also become severely disabled from this.

    When you see someone on medical disability, it is hard to imagine they used to be an accomplished professional, even a CEO. I don't know of any public business figure that was in the news for leaving his job due to CFS.

    The Apple guy got a lot of news coverage of his illness, but the public may not think of a person like that possibly getting this disease.

    Tina
  14. sosumi

    sosumi

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    Hello Dr. Donnica,

    Please review this particular journal article, as it discusses the causes of death of those with CFS:


    http://www.prohealth.com/library/showarticle.cfm?id=8197&t=CFIDS_FM

    Journal: Health Care for Women International. 2006 Aug;27(7):615-26

    Authors and affiliation: Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S. DePaul University, Chicago, Illinois, USA. [E-mail: Ljason@depaul.edu]

    PMID: 16844674

    Chronic Fatigue Syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome.

    The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS.

    There were approximately three times more women than men on the list.

    The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths.

    The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed.
  15. _Kim_

    _Kim_ Guest

    Judy Mikovits talks to Oz

    From the WPI Facebook Wall: 11/14/2009

  16. Nielk

    Nielk

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    thank you

    I wanted to join in to thank Dr. Donnica for representing us.

    I also saw the GMA interview and was very impressed.

    I just wanted to say that from watching Dr. Oz's shows a couple of times, I've noticed that he jumps from topic to topic and doesn't devote much time
    to any specific problem. (probably to keep up the interest of the viewers who
    don't have too much patience)


    Therefore, we should try to be as consise as possible and only mention the most important points we want to get across.

    I am really sorry about your husband and son. As a 7 year cfs sufferer, I always feel sorry for my husband and children that they have to watch me suffer and are frustrated that I am not improving with not much hope for
    the future.

    As far as disclosing about your family members being sick, of course that's up to you but, I am of the opinion that it might not be helpful because viewers might perceive that you might be talking from emotions instead of clinical facts.


    Thank you again,

    Nielk
  17. bakercape

    bakercape Senior Member

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    Dr. Donnica

    Thank you for doing such a great job on GMA. You definetely packed in a ton of awesome and accurate info into that last segment. One thing you said on here concerns me though. You said you will probably be more negative about CFS right now because your son was doing better then but has relapsed now. I think you should be careful that your personal CFS experience with your family does not become a barometer on how severe you portray or talk about CFS?ME affecting peoples lives. I feel it is important to be consistent in how horribly disabling this illness is even if your family is doing better with it.
    Thank you for all your efforts you come across great on TV.
  18. starryeyes

    starryeyes Senior Member

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  19. gracenote

    gracenote All shall be well . . .

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    CFS or depression quote

    I think this is a good quote from Dr. Leonard Jason.
  20. dsdmom

    dsdmom Senior Member

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    Thanks!

    Thank you Dr. Donnica - this means so much to all of us.

    If there was one thing I'd like to add it would be about orthostatic intolerance. I don't think people have a clue that many of us have difficulty just standing or being upright. And that it has nothing to do with 'fatigue!

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