The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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NBC report on CFS and the new dx

Discussion in 'Institute of Medicine (IOM) Government Contract' started by minkeygirl, Feb 10, 2015.

  1. minkeygirl

    minkeygirl But I Look So Good.

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  2. Jshuler43

    Jshuler43

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    Agreed! She was a Rheumatologist. I think she has Fibromyalgia mixed up with CFS.
     
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  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Evidently neither she nor anyone else at the Nightly News read the report. They just grabbed the nearest medical correspondent who felt like they could answer rather than trying to find an actual expert.

    Very sloppy reporting.
     
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  4. minkeygirl

    minkeygirl But I Look So Good.

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    Who goes to rheumo anymore for treatment?

    A vet would have been better able to talk about this.
     
  5. RL_sparky

    RL_sparky Senior Member

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    What a crappy job on the part of NBC News but I guess it's apparent that they have a problem with telling the truth.
     
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  6. Jshuler43

    Jshuler43

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    So irritating! Exertional Intolerance and exercise is good!'

    The exertional intolerance must not be that big of deal. What kind of disease is it when the premise of the the whole name is worthless.

    I'm not totally against the name, but if the same misconceptions are made, it's not worth anything. ​
     
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  7. minkeygirl

    minkeygirl But I Look So Good.

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    @RL_sparky Being ignorant and lying are different things.
     
  8. CBS

    CBS Senior Member

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  9. Patrick*

    Patrick* Formerly PWCalvin

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    I just emailed NBC News' email address contact.nbcnews@nbcuni.com. This is the email address specifically set aside "To report an error or comment on NBCNews.com or an NBC News program." I encourage others to do so. Although there were many problems with the report, I think the most egregious error was Dr. Natalie's Azar's statement at the end about CBT and GET. I chose to focus on that.

    Edit: The text of what I sent is copied below. (If you believe I went too easy on the HHS, the IOM report, and other aspects of the NBC report, that was deliberate. I believe if you want to have any chance of changing minds of average people, you have to pick small winnable battles. I'm not trying to win the whole war with this email.)

    Dear NBC News,

    You normally do a fantastic job and I typically recognize and appreciate your professionalism. However, you ran a report about Chronic Fatigue Syndrome today that ran afoul of acceptable journalistic practices. It started with a video package that highlighted some of the key points of the Institute of Medicine’s (IOM) findings in a new report, among them: that the disease is not psychological and that exercise worsens the condition. (This is actually not new information, but these findings are, apparently, finally being recognized by HHS). Then the report really fell apart.

    Lester Holt interviewed Dr. Natalie Azar and Dr. Azar directly contradicted the information in the the preceding video package, and in the IOM report that the piece was about. She merely recited decades-old, disproved treatment theories, i.e. that exercise and Cognitive Behavioral Therapy are affective treatments for CFS. This is demonstrably false - they have been proven ineffective again and again in peer reviewed studies because serious immune deficiencies (among other things) are at the root of the disease. Dr. Azar seemed unprepared and misinformed. She apparently didn’t read the IOM report that was the subject of the piece.

    Please let Dr. Azar know that she is not there simply to fill airtime, but rather to add value to the discussion. Today, she created confusion and spread blatantly incorrect information. It was unacceptable by any standard of journalism.

    Sincerely,
     
    Last edited: Feb 11, 2015
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Sad but I agree and I am hoping no one is really paying too much attention to NBC news any more.
     
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  11. Apple Cobbler

    Apple Cobbler

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    This is what I emailed to NBC earlier today after watching the video:

    "Your news team did a terrible disservice to people suffering from this condition. Your own report stated symptoms are “profound exhaustion” and yet you selected someone who was standing and preparing lunches, getting her children ready for school, doing dishes, cleaning the kitchen. Her hair was styled. She had make-up on. Where was the profound exhaustion? You showed the world someone who looked like she was fully functioning and never showed or talked about what she couldn’t do. But we got to hear her say that she was “tired”. And your little power point showed someone running, making it look like people with chronic fatigue can run. For a news team, that was pathetic.

    If you are going to say the symptom is “profound exhaustion”, you should have shown someone that made this point clear. There are people with chronic fatigue who are bedridden and unable to feed themselves. I would be thrilled if I had the energy to make lunches and do dishes and sit up and read to children.

    NBC news team, you should be ashamed of yourselves."
     
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  12. Sidereal

    Sidereal Senior Member

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    Oddly I was just speaking to a friend on the phone, explaining the new case definition, when the news came on so I heard his TV in the background. I literally yelled when the rheumatologist said that CBT and exercise are "very helpful" literally seconds after the report explained that this disease is about exertion intolerance. This rheumatologist obviously didn't read the IOM report and probably is one of those doctors who think "oh yeah, thoooose patients" as if her fibromyalgia patients are the same as ME patients or ME+FM patients. Dismayed.
     
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  13. beaker

    beaker ME/cfs 1986

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    Actually I go to a very nice rheumy. Please don't lump them all in with this uninformed person.
     

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