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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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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. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    excellent video especially the ending where she clarified cfs and cf. it was driving me crazy until then!!!!
  2. caledonia

    caledonia

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    Cincinnati, OH, USA
    If you ever get a chance to work with the media (newspapers, tv, etc.), you'll find out this is the normal order of business. If you want free publicity such as a spot on the Nevada Newsmakers show, you're much more likely to get on if you buy advertising - an "I'll scratch your back if you scratch mine" arrangement.
  3. DrDonnica

    DrDonnica

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  4. kit

    kit

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    USA
  5. Otis

    Otis Señor Mumbler

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    Thank you Dr. and the best to you and your son. I had a brief encounter with what was probably CFS when I was 14 and then a 20+ year 90% remission so keep the faith.

    Otis
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Dr. Donnica,

    I agree you did a fantastic job. I have never once heard someone point out in a media piece or a journal the difference between chronic fatigue and "CFS". (and it is very rare for a media piece not to conflate CF and 'CFS') This is so important, so thank you especially for that!
  7. shrewsbury

    shrewsbury member

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    Thank you Donnica. You did a fantastic job. And I agree with justinreilly about the importance of pointing out the difference between cf and CFS.

    I love your ability to convey meaning with your use of chunking info as well as using intonation, phrasing and speed. When you said "Chronic Fatigue Syndrome is a very complex neuro-immune disease “ you stressed each word individually and also slowed down and emphasized the enunciation of complex neuro immune disease . Very effective at having the audience know that this is an important point and perhaps even remembering it.

    Wonderful to have such good news re Brian. I wish him a remission like Otis’, and then long before the 20 years are up we should have a cure, or at least highly effective management meds.

    We’re so lucky to have you as a spokesperson.
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    And, Dr. Donnica, if you didn't see my post on Facebook, I really like the way you take the interviewer's question and use it to emphasize a point you want to make, without just totally ignoring the question. You put your twist on it so the message you want to gets across is what gets across, not just what the interviewer wants.

    Of course, if I was interviewing you, I would ask a follow up, "But you didn't specifically answer my question... " Tee hee.

    It's the dance of news and you have a way of gently taking the lead, even though you aren't the one asking questions.

    Tina
  9. Dolphin

    Dolphin Senior Member

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    I'm not convinced that the UK (or anywhere else in the developed world where they pay a lot of disability payments etc) can't afford XMRV.

    Lots of the people currently are unable to work and cost the state a lot of money: as well as disability payments, they also are sometimes supported with their housing needs, etc. While if they were were healthy, they could be productive members of society, giving more (through taxes) than they take.

    I don't think governments will necessarily need to treat a few per cent of the population. Nearly a million people (or approx 1.5%) in the UK have Hepatitis C http://www.wrongdiagnosis.com/c/chronic_hepatitis_c/stats-country.htm but the country it hasn't bankrupted the country - I don't think they are all actively treated.

    Drugs can also get cheaper if they are needed by more patients and also if they go off patent.

    I'm not convinced there is a conspiracy at government level. Although we can see from the Science e-letters, that some people e.g. Wessely, White, Sharpe, etc., want to bash the XMRV hypothesis on the head.
  10. free at last

    free at last Senior Member

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    I think the conspiracy is the advice given to goverment officials, white sharp ect. If the advice was different, then i belive a different attitude funding for research benefits ect would be different.

    That probably is as far as a conspiracy goes. But the effect is the same. I used to think if i had got my temptature taken all those times in the early days, proving illness things would have been different. But after seeing the panorama program about Kay and lynn Gilderdale, im not so sure, she was in hospital 50 times with numerouse proven medical symptoms, what difference did that do for her ? Just breaks my heart to see these things happening in my country. Its wrong its just plain wrong. And only science will ever change the possibillity that this will happen again

    So thank you WPI and all the american researchers taking this seriously. One day your work is going to change this appaling situation. we do have a few researchers fighting for us, Mr Hooper for example. Ive read the work Kerr has done. But whats with hes complete silence on the fact the wpi has found positives out of some of the negative studys done in Europe. This strikes me as so very odd. If he belived XMRV was not worth continuing with, surely after what we have learned so far after these studys, would compell him to speak up.But so far not a whisper what gives with that. Wonder if its worth contacting him and asking for a opinion especially as the Germans couldnt find XMRV Then suddenly they can
  11. Sasha

    Sasha Fine, thank you

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    I agree, tomk. The cost of people with severe ME/CFS not working is huge (lost tax, dependence on benefits, and our carers' benefits and lost tax) and I think that it would be overwhelmingly cost effective to treat us and get us to work. Also, unlike HIV, only a small fraction of people with XMRV are sick; many may not need treatment if their viral load is low.

    I really can't see an economic argument for not treating; I see an overwhelming economic argument in favour of treating.

    When I first got sick, I was bedbound and couldn't work for years. I then had a remission and in that time paid enough in tax to pay for my earlier benefits many times over. Benefits are low, taxes are high! It's easily and obviously worth getting us back to work.
  12. HopingSince88

    HopingSince88 Senior Member

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    Maine
    I am in complete agreement with you, Sasha.

    One of the other things to consider in terms of economics and the true cost of this disease is that it is spreading. If we don't properly find and treat those with this disease it will continue to expand its reach. We are likely passing this onto our children and they may infect others.

    Think about how cancer is undetectable in its early stages. If found early and treated you have a better chance of surviving and regaining health. If ignored the cancer will spread and metastisize. The same thing is happening with CFS.

    It is time for the governmental and health authorities to take their collective heads out of the sand.

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