Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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opportunity -- Video by "Second Opinion" (PBS Show) Posted

Discussion in 'Action Alerts and Advocacy' started by beaker, Aug 23, 2015.

  1. beaker

    beaker ME/cfs 1986

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    Second Opinion is a well regarded PBS medical show. They cover a wide range of health topics . Previous shows can be seen at the website. They did do one on FM that was pretty good. The format is a patient and a panel of doctors ( usually includes one who has the illness too) and they discuss a case history. Giving their opinions.
    They have been posting "5 fact" videos recently and linking them up on twitter.

    They just put one up on CFS !
    Sadly they do not use ME, but whatever. ( we can help educate them ? We need to make friends )
    For 5 points it was pretty good. The twitter link is : https://twitter.com/SecondOpinionTV/status/635620276114468864

    Please Favorite this tweet and comment w/ thanks. (and RT too of course)
    If enough interest is shown AND we ask, perhaps they would do a show !
    They may also be on FB and other mediums. You also might be able to contact the show through the website. I find twitter to be the easiest energy wise for me.

    My dr. has been on their show a couple times . I will forward to him and see if he can push a little.

    Great opportunity here.

    ETA : Although posted on Twitter the video is on Youtube. There is also place to comment there. Someone was there asking questions and I directed them here. A great place to add more info and answer questions. Please chime in there too if you can.
     
    Last edited: Aug 24, 2015
  2. beaker

    beaker ME/cfs 1986

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    Only 2 RTs and 2 Favs. : (
    Don't forget to Thank them for putting up this video.

    Please support this opportunity !!
     
    Hutan and Bob like this.
  3. Hutan

    Hutan Kina solidarity

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    I don't use twitter. I clicked on the heading of the video to get through to You Tube. There, you can like the video, which I have done.

    But, in You Tube, of 49 views, only 2 have liked it. It's not a perfect explanation of ME, but it's pretty good. It only takes a few seconds to click through to You Tube and like the video.
     
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  4. Bob

    Bob

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  5. Michelle

    Michelle Decennial ME/CFS patient

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    Hmph.

    Watched the two YouTube videos they had on it. The first -- Second Opinion 5 -- isn't bad. But yeah, no mention of PEM. At all. No mention of orthostatic intolerance. No mention of sleep problems. So...they haven't read the IOM report. And she says that it doesn't worsen over time. I would beg to differ given that I could drive in 2003 when I first got SSI and now am completely housebound (my doctor must make housecalls).

    The second, "Myth or Medicine" is awful. "CFS is a psychiatric condition; it's a little bit myth AND little bit medicine." It's presented by a neurologist in a bow tie (my bf argues anyone who wears a bow tie is an a**hole; most of the time I find he's right) who says that it's a "collection of symptoms" that can be caused by many disorders such as infection, thyroid, etc. and depression. Then spends the second half of the two minute video talking about depression and CFS. He ends by stating that CFS is not a psychiatric disorder but that "depression can certain play a role in persistence of symptoms and talk therapy can help the patient get better." Ugh. Ironically he does mention sleep problems and orthostatic intolerance.

    Very mixed reviews so far. Is it that hard for them to reach out to a real specialist in this disease instead of some neurologist in a bow tie who says he is? Also, on a more general note, we've got to get people to stop with the whole "Chronic Fatigue Syndrome IS a real disease!" Every time someone says that, it undermines the effectiveness of what he or she thinks he/she is saying.
     
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  6. Bob

    Bob

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  7. Hutan

    Hutan Kina solidarity

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    @Michelle, I hadn't seen that second video. Groan. You are right. Perhaps we should put lots of dislikes on it.

    I wonder what patient and what doctor Second Opinion have found for their show. Better not be that man in the bow tie.
     
    Bob likes this.
  8. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Would it be possible to get them to do their show on SEID rather the CFS? That would unmuddy the waters a little.
     
  9. beaker

    beaker ME/cfs 1986

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    I suggest putting constructive criticism comments on their twitter, youtube and FB pages. Add links to IOM, Lipkin papers, OMF, 2 day VO2 max studies by Betsy Keller, and Stacy who's last name is no longer in my brain.
    etc.... Let's shower them w/ facts.

    I am working on writing something. Been a bad couple days.
    So obviously , one can only do what you can when you can.
    Best to you all.
     
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