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Article: Report - CFS Will Be on CBS National News Feb 23rd with Katie Couric and Nancy Klimas

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 22, 2011.

  1. Yogi

    Yogi

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  2. Nielk

    Nielk

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    This is the comment I just sent them:


    Hi, I understand that Katie Couric is doing an interview about ME/CFS.
    I'm a 54 year old female who has been ill with this disease for the past 8 years. This is an invisible disease that is incapacitation yet there is no outward sign of it,
    so people, doctors, friends don't take it seriously. They believe we are just 1,000,000 people in the US who have nothing better to do then all of a sudden take to bed and not come out. Think about the worst flu you ever experienced. Add daily migraines, cognitive problems like wrong words coming out of your mouth. Think food and chemical and noise sensitivity to the point that you have to live in isolation to make life semi bearable. Take all this and take it every day of your life for years and years. While you are suffering like this, the medical establishment with the help of the psychiatric establishment either ignores you or tell you it's all in your mind. How do they know that? Because the insurance industry is paying for skewed up studies that come up with the results that they want published.
    The powerful insurance lobbies have a big stake in keeping this illness quiet. It's affecting over 1,000,0000 people in the U.S. alone. If they would have to pay for treatments or disability benefits for all these people, it would put a great strain on their finances.

    Nielk
  3. August59

    August59 Daughters High School Graduation

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    I'm glad we are finally going to hear from Dr. Baranuk. I know you are glad Cort, since he had your spinal fluid to study. Or was that in the earlier study only? I know I have asked 3 or 4 times when it going to be published and I'm glad it is here (I think)!

    This interview with Dr. K and story with Katie Couric is probably one of our biggest opportunities in a long time and if there one thing we need to do is be smart! Not sure how, but if anyone has a chance of input hey have got to be smart about it. Please this not a time to let pent up emotions to come boiling out. I'm just praying very hard that this is good news and exposure for us on all fronts!!! Thanks Cort!:victory::victory::victory::victory:
  4. Sing

    Sing Senior Member

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    I wrote in to CBS, focussing on the problem with the criteria the UK Pace trials used for ME/CFS and how their "Oxford Criteria" are indistinguishable from Depression. I said that exercise and CBT have been well known as helpful treatments for Depression but that they are irrelevant and inappropriate as treatments for the real ME/CFS which has been scientifically established as a life-long, seriously disabling neuro-immune illness. To suggest that simply exercising more and engaging positive thinking are effective treatments, I see as a form of dishonest, irresponsible disinformation which continues to harm patients.

    On another subject, I love Prof Hooper's use of the term "Magical Medicine". Since so many are now familiar with the world of Harry Potter, we learned about the propaganda purveyed by the Ministry of Magical Effects (sorry I can't remember the exact title). And this is exactly the same thing!
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Guys, you do better to just refer to the biological stuff instead of referring to PACE. Most recent news is that they were not doing a story on PACE, but another study that is in our favor.

    Telling them about PACE may backfire.

    Just promote the story you want them to do.

    Tina
  6. Mark

    Mark Acting CEO

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    I don't have those contact details to hand and I have a workload you would not believe. All my comments on PR may be quoted for such advocacy purposes, so with apologies for not taking on yet another job, can I ask that somebody else does this if they think it's worthwhile? Sorry...but I really am swamped these days...
  7. Mark

    Mark Acting CEO

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    Great post UrbanTravels; far from being too late I think the last-minute messages they receive will be fresh in the mind when they go to air.
  8. Otis

    Otis Señor Mumbler

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    The CAA on Facebook is saying the same thing. What are the odds that CBS doesn't talk about PACE? We're in damage control mode thanks to the CAA.

    I'd rather they have facts from intelligent patients that the idiocy that comes out of Kim McCleary's mouth. Speak up people!
  9. Mark

    Mark Acting CEO

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    OK I gave in and emailed CBS News and added the following:

    In short, my summary of the situation would be this: CBT can be helpful to some people with ME/CFS who have issues with depression and anxiety, which are often induced by the feelings of hopelessness and even paranoia they experience when they find their serious health problem is not being taken seriously. However, CBT does not impact the fundamental physical illness the patients are suffering from, it only deals with any secondary psychological effects of their situation. These techniques by their nature act to train the patient to stick with whatever theory of the illness the therapist believes in, and training them to 'push through' - as GET does - rather than to pay attention to their own body, can be extremely dangerous, and it does lead to a serious worsening of the condition in the medium and long term, in many patients.
  10. Mark

    Mark Acting CEO

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    Amazing! But absolutely typical and something that systematically happens all the time.

    In my case I have often been told that my experiences or test results were "weird", "impossible", etc. and as a result those experiences have never entered the medical literature, never been reported - they are effectively thrown in the bin! Whatever doesn't fit the book tends to be disregarded as an unexplained anomaly and 'must mean the test results went wrong somehow".

    I have no doubt at all that is a systematic failing and I found Robin Weiss' letter on the history of failed retrovirology findings that "turned out to be nothing" intriguing in this respect. He recounted there a history of findings that weren't reproduced, as evidence that the XMRV findings were likely to be another example - yet what struck me was that the vast majority of the anomalies he described had never been satisfactorily explained! So there is a kind of systematic despair there, an "I give up" moment, a "this must just be a mistake" experience that is repeated time and time again. But what happens, happens, and just because it remains unexplained, does not mean it is not important.
  11. 5150

    5150 Senior Member

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    -----------------------------------------------------------------------------------------------------------------------
    Otis, I whole heartedly agree that We Must Speak Up as a united patient base. Each can uniquely contribute without rubber stamping CAA drivel that gets us nowhere! Those days are over.

    my statement reflected the point of view from those with limited funds to apply toward our illness, while the Whittemore Peterson Institute can't get funded from our Government's taxpayer monies ; And a mention about the total lack of funding across the board for CFS/ME due to a hostile political environment created by bottom-line CDC failure to engage the illness via studies & development of treatment, and their present day paranoia caused by their liability in this failure.

    it won't get a mention on air, but i sent my most important message as I see it. Educational at least ,hopefully.
    ------------------------------------------------------------------------------------------------------------------------


    PLEASE, if you haven't done so, send your message,too. don't let this national exposure quietly go by.
  12. Dreambirdie

    Dreambirdie work in progress

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    That was my thought too. I just sent a brief note about my 33 years struggling with CFS, and requested they do a report on the XMRV findings.

    I also sent a link to my youtube video.
  13. Xandoff

    Xandoff Michael

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    Thank you Cort and everybody for this information. Here is what I posted on Katie Courics Facepage. It is limited to 1000 words.

    http://vimeo.com/13048135


    I am writing you because the Chronic Fatigue Syndrome Community has heard a rumour that you might be doing a story about CFS/ME. I am a 58 y/o male from Northern Vermont. I tested positive for the XMRV retro-virus through Whittemore Peterson. Is this serously debilitating illness being ignored? I know what I think. Please look underneath these rocks we call CFS/ME. You will be surprised at what you find. Eighty per cent of the people with this illness are women.

    Please watch this video link (above) of Sam Donaldson (ABC) 1996 PRIMETIME Broadcast about the outbreak of this mysterious illness. It is the tip of the iceberg!

    We Love you in Vermont Katie!
    michaelamurphy1@charter.net
  14. LaurelW

    LaurelW Senior Member

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    I sent one too, asking them to focus on the good science that's being done.
  15. Dreambirdie

    Dreambirdie work in progress

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    I dropped Donnica Moore an email and asked her to send them a note as well.

    She just wrote back, saying she would. :victory:
  16. Otis

    Otis Señor Mumbler

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    I chose to use Twitter. @OtisQuila
  17. 5150

    5150 Senior Member

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    //////////////////////////////////////////////////////////////////////////////////////////////////////////////////////
    Actually, I see that Iwrote a lot more after retrieving it: to CBS Evening News w/Katie Couric
    @CBSNews.comFeedback

    I want to put in my viewpoint on the upcoming story about Chronic Fatigue Syndrome. First, that name is despised by every patient I know because the Myalgic Encephalomyelitis Disease is so much more than debiliting fatigue. It is a progressive illness leading to cancers, heart failure, digestive failure, whole-body inflammation, extreme sleep didorder, ad infinitum plus the constant fatigue for which we are so infamous: and let me say it is a horrible impairment in itself.

    Many patients with this condition can't afford medical attention and yet the US Govt will not provide funding for places that that would help us. Top of this list is Whittemore Peterson Institute in Reno,NV, on the campus of Univ of Nevada,Reno, with facilities and proven ability in research, yet the political climate enveloping "CFS" sees that no funding comes down from the NIH or the CDC to them. This climate began when the CDC mismanaged allocated monies to the "CFS" program, and spent it on other projects, thus beginning over 25 years of neglecting a tremendously ill patient base.

    Presently, because of their original sin, CDC refuses to allow funding to our disease to come out...because once it becomes known that they have shirked their duty to the Americans afflicted by their neglecting "CFS", the upcoming cost to treat us will be staggering compared to what it would have been originally. They are terrified of a class action lawsuit that will come from this neglect,and by the knowledge that they have let a Retrovirus go unchecked into the American blood supply. Heads will roll! and they know it.

    The current pandemic of the XMRV retrovirus is heading toward a world-wide plague, fomented by the CDC inaction. And they want to talk about "how exercise will help us", on your show? just another diversion.

    I really hope this message gets to Katie. It's the Truth.

    //////////////////////////////////////////////////////////////////////////////////////////////////////////////////////

    as you see, i'm done pulling punches on this. perhaps better editing was possible, but it was a 1 1/2 inch window provided for typing into, and extemporaneous message. anyway, it's done. let the fallout begin.
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    It's a PR strategy. Just remember, when you are dealing with reporters, when you point the finger at your opposition and their message, then the reporter goes over and talks to your opposition.

    Here is an opportunity, which seems maybe what they were already planning to do anyway, to show them the real story. So you might consider just putting forward news of XMRV or the biological studies. It's an offensive move. British psycho stuff has been playing offensive moves, putting patients on the defensive.

    The MCWPA ad was an action, an offensive move. It has led to a radio interview and a major metropolitan news article. More coming.

    Reporters want to have something other reporters don't have. Something new. Let's give them that.

    Let's make the news instead of respond to the news. Let's act instead of react.

    We have legitimate real news of biological findings. We can show reporters what the real story of the disease is.
  19. Otis

    Otis Señor Mumbler

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    Tina, here's the situation. The press isn't talking to me. This isn't a dialog over which I have any control as you would imply. The only hope is to stuff their inbox with information to balance out the damage done by the CAA this past week. They could use some PR lessons if you're looking for students.

    It's nice that you and the CAA are "in the know", and I'm not saying that as a cheap shot at MWCPA or PANDORA. Well, I'm not "in the know" about this study so I can only ACT on what I do know. Right?

    I haven't brought up PACE or anything else from "the other side" in my communications but and while I appreciate the rational I don't think it's my place, or yours, or the CAAs to tell fellow-patients what to say or to whom.

    From what I know the their story and the lead-in is reportedly about feeling tired. That doesn't give me confidence that this story is going even going to be as even so much as a little feel-good thing that will be quickly forgotten but cited as a PR victory. The damage done by PACE cannot be undone by the kind of story this appears to be.

    Which story are the physicians going to grab onto? PACE, far and away. It's already in their minds and fits with what the CDC tells them. Another (big) brick in the wall.

    After 100 of these stories we might be getting somewhere but until there's some serious conversation about XMRV in the press this is really just window-dressing, if we're really, really lucky and it doesn't go sideways. Throw some more biomedical research onto the pile where it can be ignored by those in power.

    ETA: I will gladly eat my words if there is more to this than it appears - e.g. we get to talking about gamma-retrovirus in the press.
  20. Cort

    Cort Phoenix Rising Founder

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    Amazing Guido!

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