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Nevada News Makers interview with Annette and Dr. Donnica Available for Download

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Frickly, May 18, 2010.

  1. Frickly

    Frickly Senior Member

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    Nevada News Makers with Sam Shad is now available for download.

    Guests:Annette Whittemore, President and Founder, AND Dr. Donnica Moore, Spokesperson, Whittemore Peterson Institute
    http://www.nevadanewsmakers.com/video/nnmstreamb.asp?showID=1066

    Sam Shad asks Annette, How much is Frances Collins, head of the NIH helping in terms of funding. Annette replies, I sent a request to Frances Collins for funding and got a reply saying, We need to wait and see.

    Sam Shad asks Annette to read between the lines of what he is saying. Annette replies, he means it's up in the air but you certainly have brought this to my attention.

    I think we all know what that means. No funding for the WPI....
  2. shrewsbury

    shrewsbury member

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    Annette Whittemore & Dr Donnica on Nevada NewsMakers May 18 2010

    I found this on XMRV Global Action - nice catch there!

    [video]http://www.nevadanewsmakers.com/video/nnmstreamb.asp?showID=1066[/video]

    Would love it if someone could transcribe, or capture more accurately, \Dr Donnica talking about other countries not finding XMRV and perhaps not wanting to pay disability costs, but that ME/CFS actually costs a country much more by not paying for disability.

    And at the end she drilled home chronic fatigue vs Chronic Faitgue Syndrome.

    Only thing I didn't like was that WPI is now one of the advertisers for the show.
  3. Robin

    Robin Guest

    SB I would transcribe if I could -- I'm just not up for it.

    Dr. D did an awesome job I thought, esp. describing how debilitating it is. I didn't know that both her husband AND son were ill. Ugh. :(
  4. shrewsbury

    shrewsbury member

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    no worries rOBIN - I'd do it if I could too. I don't think the whole think is worth transcribing, although it is a good listen, but I think Donnica was socking it to the psych cabal - so wanted to get that bit and see if I got it right.

    yah - and she and her daughter are ok.
  5. Stone

    Stone Senior Member

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    I also loved how Dr. D got the guy (hopefully) to stop calling it 'chronic fatigue'. It's a pet peeve of mine, no, it's more like a major insult and since it's unintentional, it's hard to correct people without sounding like an anus. But it really bugs me. After all, why don't we call "ED" "Chronic Impotence"? Because it's insulting and demeaning. We're so politically correct that we can't even use the word 'retarded', which simply means 'suppressed', but instead we now use so-called polite terms like "special needs" or "mentally challenged" which to me sound quite demeaning and condescending. On a recent visit, my doctor kept calling CFS "chronic fatigue", and I politely and respectfully told her that the CFS community considers the term "chronic fatigue" trivializing and somewhat insulting. She looked at me like I had two heads and said, "Well what am I supposed to call it?" And I replied, "Chronic Fatigue SYNDROME", since chronic fatigue simply means 'tired a lot' but Chronic Fatigue Syndrome is a discreet disease complex unto itself and calling it 'chronic fatigue' is like calling Parkinson's "chronic shaking". She indicated that she understood, but I could tell she still thought the whole thing was dumb. So I then told her that it's only called Chronic Fatigue Syndrome in the U.S. and that it's called "Myalgic Encephalomyalopathy" or "Myalgic Encephalomyalitis" everywhere else around the world. She was amazed and actually wrote it down and said she was going to study it more. There's a lot in a name, I tell ya.
  6. Koan

    Koan Be the change.

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    Dr Donnica only, sorry Annette but this is all I could manage and I think it is what our dear SB wanted. So, SB, this one's for you!

    Donnica Moore on the history of her interest in CFS:

    Basically I’ve always been very interested in and committed to women’s health issues in general. Particularly those issues which have been misdiagnosed, under-diagnosed, under-detected or under-treated. My particular pet peeve are doctors who dismiss women, or men, who have chronic complaints with the, you know, “It’s all in your head, dear.” and this was one of those diseases.

    So, in 1992 I was the Founding Chairman on the National Congress on Women’s Health and we decided to do a seminar, as part of this congress, called: It’s Not All In Your Head. And one of the major diseases we focused on was Chronic Fatigue Syndrome.

    So, I talked about it on and off and wrote about it a fair bit until, in 1999, lo and behold, my own husband who had previously been a triathlete and exercised every day no matter what, came down with a flu like illness which did not resolve and ultimately he was diagnosed with Chronic Fatigue Syndrome.

    Several years later, in about 2004, my son Brian was in the same exact situation. He was a 100% well, he was a top athlete and he - my daughter and I all came down with the flu-like illness at the same time, my daughter and I got better in 7 to 10 days - and my son never recuperated. And, that’s pretty much the story we hear in about 90% of patients: that they were generally well until a flu-like illness, or some other event - for a minority of patients that might be a head trauma, or a car accident, a surgery, giving birth to a child - but the overwhelming high % of people with Chronic Fatigue Syndrome begin their journey with a flu-like illness.

    On politics, insurers, governments...:

    Well, I think the bigger issue is what’s the cost of not knowing the cause of Chronic Fatigue Syndrome and what is the cost of not knowing the treatment? The fact is we don’t even have that information but it’s probably in the billions of dollars.

    I think what we have to focus on is the scenario in the United States. As much as I care about patients around the world, we have to start at home. And, we can’t make our scientific policy and our scientific research plans and research funding based on other countries being afraid that they’re going to have to bear a bigger burden of the cost for their disabled people. And, if they’re going to commit to helping disabled people, they should commit to helping all disabled people.

    Now, interestingly, back to the issue of children and Chronic Fatigue Syndrome, a paper just came out a week ago in the Journal Paediatrics, and it’s a very small paper - there are only 25 children with Chronic Fatigue Syndrome in this paper - but one of the key findings in this paper show that the quality of life for the children with Chronic Fatigue Syndrome was worse that that compared to previously published studies of kids with Type 1 Diabetes or Asthma.

    This is the kind of thing that people need to understand: this disease causes significant disability, significantly impaired quality of life. And, of course, there’s a tremendous cost of treating but there’s an even bigger cost of not treating.


    In answer to a question about how parents of children with CFS or FM should plan for the future.

    That’s a great question because one of the biggest frustrations is we can’t plan for the future. If I had known when my son became ill that it was going to last this long - and my son is a 16 year old high school junior; he’s been sick with this for over five years - I would have made very different decisions about his schooling, and his overall treatment than I did at the time when I kept hoping it was going to get better.

    We don’t have a crystal ball. The only study that’s available on the long term follow-up of children, that I know about, is a study Dr David Bell did, well more than ten years ago, which looked at 225 children - as far as medical studies go that’s a very small group - and they found that 50% of them got a little better after 2 years. 25% of the remainder got a little better after 6 years. 25% of the remainder got worse and 25% stayed the same. So, when I read that five years ago, I was devastated thinking that my son might be sick for six years and I couldn’t even think of the possibility that it would be for ever. But, if now you told me that in sick years he would be well, I would take that in a minute! So we can’t plan. Every other one of my children’s classmates are planning for college. We don’t know if he can go to college. And, he’s the number one student in his class. But, he can barely get across the street to go to high school.

    But the other very important thing that you mentioned, and this is a semantic issue, is the difference between saying someone has chronic fatigue and saying Chronic Fatigue Syndrome. Calling Chronic Fatigue Syndrome, or CFS: chronic fatigue is like calling Tuberculosis: chronic cough, or calling Parkinson’s Disease: chronic shaking.

    Chronic Fatigue Syndrome is a very complex neuro-immune disease that has so many sequelae and so many side effects and consequences and other organ system failures well beyond fatigue. And, that fatigue is not “I’m tired”, it’s not “I don’t feel like playing soccer today.”, that fatigue is “I don’t have the energy to lift a water bottle or get to the bathroom.
  7. Kati

    Kati Patient in training

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    Congrats to both Annette and Dr Donnica for a great interview- They made their points very clear and made sure the anchor didn't get away with "chronic fatigue". Thank you Annette for approaching senators- and speaking up on our behalf.
  8. Dreambirdie

    Dreambirdie work in progress

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    Thanks Koan, for transcribing. I can't make the video operational, so I was glad to be able to read at least some of what was said.
    :hug:
  9. Koan

    Koan Be the change.

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    I'm so glad this was helpful to you, DB! That's a bonus for me!

    Dr Donnica's story is very interesting, don't you think.

    Sorry I didn't transcribe AW but I popped right out of the toaster!
  10. gracenote

    gracenote All shall be well . . .

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  11. starryeyes

    starryeyes Senior Member

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    Thank you for transcribing Dr. Donnica's remarks Koan. I don't have the energy to transcribe much but I did want to quote Annette Whittemore saying:

    I'll say. Wow!

    Also, what Dr. Donnica said is very true. It costs more to not treat us as many of us live for decades in a disabled state.

    I also want to say a huge THANK YOU to Senator Reid who has always been there for us!! :victory::victory::victory:

    If you're having trouble getting the video to play try http://www.nevadanewsmakers.com/video/nnmstreamb.asp?showID=1066

    scroll down and download M4V Video or MP3 Audio. It took about 5 min. for my laptop to download the video.
  12. shrewsbury

    shrewsbury member

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    Thank you so much Koan. This is much more than I asked for - and every word is appreciated. But do take care - I'd rather raise a virtual toast together than hear you are toast!

    The bit about other countries wasn't as strong as I had interpreted it to be, but still good.

    They both massage sound-bytes well. And the personal touch along with specific concrete examples, like "he can barely cross the street", often work for getting people to understand when stats, research etc don't. I'm glad Donnica went over time to get the nomenclature straight. And I'm very proud to hear us in much of what she said.

    And starry - thanks for getting the highlights of Annette's part. I liked hearing that there have been 23 papers since theirs came out Oct 8; I hadn't realized it was that many.
    :Retro smile:
  13. VillageLife

    VillageLife Senior Member

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    FAB interview!!! Things which stood out for me,
    It was said 400 people have tested positive for xmrv, that have CFS.
    and they mentioned the UK NHS and the fact it's the money for treating us that will stop them finding the answers to our illness.

    I think if the NHS treat us UK CFS patients thats about 250,000 people and a huge amount of them if they were better (with good future treatments) could go out to work and earn loads of money and that money would then go back into the NHS, so if we get better we can work!
  14. paddygirl

    paddygirl Senior Member

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    Mother love

    No luck with opening any of the links either, but found it on Youtube.

    I don't think anything will stop these women, Dr Donnica could barely restrain herself, good woman!

    Mothers Against CFS!:victory:
  15. paddygirl

    paddygirl Senior Member

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    Hi Villagelife, I lived in England for many years and find it hard to believe how much of a grip the Psychologists have on the politics of ME. England to me was a forward thinking, open minded society which makes these attitudes even more shocking. The Big Lie seems to be deeply entrenched.

    I came across it in person when I spoke to an English Neurosurgeon and a neighbors daughter with MS when we were discussing LDN. Both were horribly dismissive when I told them I had ME/FM.

    As England is in the EU, I believe you would be entitled to treatment in any EU state. Of course, why should you leave home? I would describe the situation here in Ireland as one of benign neglect. No outright hostility but a pat on the back and a box of anti depressants is as far as it goes. if you ever need help here for treatment let me know, but it remains to be seen if the unconscious Dept of Health will come round. I might get on a plane for Reno yet. x
  16. Frickly

    Frickly Senior Member

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    Merge threads?

    Can we merge this and the other thread under General ME/CFS? Oh.....and please delete or change my title with the word "Navada"? :Retro redface:
  17. bullybeef

    bullybeef Senior Member

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    The interview also acknowledged what most of us have suspected, the UKs NHS cannot afford a retrovirus. The over global prevalence of XMRV is ~6%. Take this into account here in the UK would mean there are 3.6 million XMRV carriers, were the majority would be either considered healthy, undiagnosed, or maybe misdiagnosed. UK HIV prevalence is around 83,000, with around 20% unaware of infection. So, with all the millions spent on HIV research between 83,000 people, how would the UK government process 3.6 million XMRV carriers?? Even my GP suggested they won't, and she believes XMRV could be the smoking gun.

    And coming out of a global recession means the UK, like many countries, are tightening their belt. XMRV could potentially force countries into a new recession, and that is the last thing any government wants. It is going to be very interesting how they deal with the financial repercussions of XMRV.
  18. VillageLife

    VillageLife Senior Member

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    if there was another tsunami tomorrow somewhere around the world or a huge earthquake where 250,000 people needed aid, they wouldnt leave those people to fend for them selves, we'd all go help them and spend loads of money helping them and help rebuild there lives. This has to be viewed in the same way, you cant just ignore the situation in times of crisis the whole world pulls together and we always get the job done.

    I think people in the Uk, would understand that we wouldnt have clinics built over night or top doctors suddenly appearing but we could get a test, some medicine and good support from our GP, we would be happy! We could use the HIV clinics for support (If XMRV was proven) and in time the correct hospitals and specialists would come.

    I think people in the UK would understand, it would take time to get the huge resources but in time they would come.

    Rome wasnt built in a day - and anything would be better then what we've got right now.

    One of the best ways the UK NHS/Government could help us, would be a huge Media campaign, teaching everyone that the people who have had ME/CFS all these years, your closest friends and relatives have a REAL and terrible illness and need lots of support and kindness.
    There is so much that could be done.

    Maybe one day I will be better and I would like to be able to help those with CFS. We must be given the chance to put right what is wrong.
  19. Dreambirdie

    Dreambirdie work in progress

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    Thanks again Koan. You are a toasty bonus! :D (whatever that means...it sounds good tho) :Retro wink::Retro tongue::Retro tongue::Retro tongue:

    I think it has helped Donnica to know that WE ARE HERE (on this forum), and that she will get both feedback and requests from us periodically. When I helped her put together the talking points for the Dr Oz show, I got to stress which points were REAAAALLLY important to us, and she has never let us down with those, especially the part about... CFS is not just fatigue, it's a debilitating NEURO-IMMUNE disease. She really likes it when I email her on big issues, like Dr Yes's recent crisis. She doesn't have time to follow the forum postings, and appreciates when I send links to threads like that.

    Yes we do have a FANTASTIC ally in her.
  20. Sing

    Sing Senior Member

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    Thanks, Dreambirdie, for your work in connecting us to a great ally, Dr. Donnica!

    Sing

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