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letter to CFIDS re Dr Oz (wrong IMHO) stance

Discussion in 'Action Alerts and Advocacy' started by shrewsbury, Dec 7, 2009.

  1. shrewsbury

    shrewsbury member

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    I just skimmed the CFIDS newsletter of Fri Dec 4

    Included is this statement

    Dr. Oz featured CFS and XMRV on his Dec. 3 syndicated television program. The 13-minute segment disappointed many who hoped for a more comprehensive report. Here's a companion article by his guest expert, Dr. Donnica Moore. ​

    I completely disagree with this and am about to email them at cfidslink@cfids.org saying so. I think the Dr Oz show was incredibly responsive to the feedback on the first BAD segment with Dr Teitelbaum, and that the show did a great job of having expert, credible guests, and cramming accurate info into the 12 minute segment.

    CFIDS seems out to lunch on this. People were rightly upset after the Dr Teitelbaum segment - did they comment on that and I missed it? I haven't seen much negative response to the Dec 3 segment. Their blurb seems to suggest that people expected the Dr Oz show to change its format just for the segment on ME/CFS.

    Not impressive. It seems to me that they are damaging the good advocacy work done and the good response to it by the Dr Oz team.

    hmmmm - Not sure if I should write to the Dr Oz team and ask them to ignore the CFIDS comment as CFIDS is trying to come out of the dark ages communication-wise and hasn't quite figured it out yet.

    islandfinn:)
     
  2. Koan

    Koan Be the change.

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    ..... :confused: .....
     
  3. Andrew

    Andrew Senior Member

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    I would not write to Dr. Oz show saying we disagree with other patients. I have read negative comments, positive comments, and mixed comments. I would let them sort it out.
     
  4. Koan

    Koan Be the change.

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    I agree. We don't want them to start thinking that ME/CFS is co-morbid with graphomania :eek:

    Wouldn't help the cause :D
     
  5. Lily

    Lily *Believe*

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    hahahahahaaaa

    I agree Koan:eek:
     
  6. shrewsbury

    shrewsbury member

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    thanks andrew and koan

    oh my gosh koan - out loud laughter - that's up there with sadism by proxy and Andrew's jokes!

    if:)

    and lodershaw - we were posting at the same time
     
  7. Marylib

    Marylib Senior Member

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    oh dear...

    Well maybe CAA is trying to be more proactive...well that is good...kinda ironic that they express dissatisfaction with what so many feel is such a positive step forward...oh dear....
     
  8. starryeyes

    starryeyes Senior Member

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    It seems the CAA is way out of step with the patients on this one. However, it does fit their recent statements regarding the WPI's finding of XMRV.
     
  9. Dr. Yes

    Dr. Yes Shame on You

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    I had a few complaints about the Dr. Oz segment, such as presenting XMRV as if it was the only physical evidence ever found for ME/CFS, but everyone's been doing that....The only major problem I had with it was his blabbering about exercise in the closing seconds, which was NOT good. But that can't possibly be what the CAA has a problem with, since they're even worse about exercise! So I can only assume that they're still riled up about the whole XMRV thing and are trying to make trouble for anyone who makes the WPI look good.


    -The CAA took my baby a-way....
     
  10. Sing

    Sing Senior Member

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    Another Take

    I wonder if the CAA is actually doing the opposite of what writers here are thinking---meaning I wonder if it is trying to show that it is trying to be more responsive to the patient community rather than kissing up to other powers-that-be, such as the OZ show or the CDC, the big hitters.

    Maybe the CAA and the Patient Community are like dance partners who are sometimes out of step as they learn a new dance, but who are both trying to get it together so they can move down the floor as a coordinated whole!

    Cecelia
     
  11. Andrew

    Andrew Senior Member

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    FWIW, I'm also in a another (and much smaller) forum and everyone there is very disappointed in the Oz show.

    I think it's a matter of a glass being seen as half empty versus half full. I think many of us are looking at the half that is full and feel very happy to have us treated very seriously on television. I know, I am. I think it's a media victory, overall.

    But I cannot forget the part that was half empty. The entire framework for his presentation was fatigue, with the solution being exercise. No mention of immune problems. No mention of cancer risk. Just a lot of fatigue, with a few incidental side symptoms.
     
  12. Koan

    Koan Be the change.

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    I think it's important to remember that it was not their intention to do an in depth show on ME/CFS. The segment was on the XMRV research as it relates to, and changes the basic perceptions of, ME/CFS.

    In a 12 min. segment there is, of necessity, a very narrow focus. I think they got a lot into those 12 minutes, in large measure thanks to the efforts of Dr. Donnica.

    I am bewildered as to why people would expect more than this - bad exercise advice, which was countered on air, aside - from a 12 min. segment on a show that popularizes medical information. In fact, they go into few things in as much detail as they did this.

    This was not a documentary, it was Dr. Oz.

    I don't get it.
     
  13. Advocate

    Advocate Senior Member

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    I suppose no TV show can please everyone, but the Dr. Oz show (not the trailer) pleased at least one person--me. It wasn't perfect, of course, but I can't think of anything I've ever seen on TV about CFS that was better. I think it will help improve some people's ideas about CFS.
     
  14. bee33

    bee33

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    I thought the segment on the Dr. Oz show was excellent and that Dr. Donnica did a fantastic job. (I'm adding my perspective because I haven't commented on this show yet, so here's another positive response, for what it's worth.)

    I wasn't even that bothered by the exercise comment, because he did say, "even if it's just walking slowly to the mailbox," which I think gave a good idea of the very modest level of exercise he was referring to. (I know that some of us cannot even walk to the mailbox, and it would have been great if he had mentioned that.)

    I was a bit taken aback by the mention of memory loss as a primary, diagnostic symptom, and by seeing it described the same way Alzheimers is described ("can't remember what your keys are for"). Although I am often so exhausted that it can be hard to think, and I am severely affected by this disease in many ways, personally, I have no memory loss. (I can still do crossword puzzles.) If I knew less about CFS I might have watched that and thought, "I guess that isn't what I have, since one of the most important symptoms doesn't fit."

    About the newsletter, I think I used to get that about 12 years ago, and I remember it making me so upset once that I actually ripped it up and threw it in the garbage. (Ironically, as I recall the article was about dealing with anger... ;D)
     
  15. Marylib

    Marylib Senior Member

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    Oh well....

    What she said.

    As for why many are responding with the glass half empty perspective, maybe we are all like starving dogs trying to find out how to get even more food even when we have just been given a big meal...

    What a silly analogy...but I too was so, so, happy that the 12 minutes on a tv entertainment show was as good as it was!.. Huzzah huzzah Dr. Oz, I have hopes for you yet!
     
  16. Koan

    Koan Be the change.

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    Are you kidding? I loved that analogy! I said , "yeah!" out loud.
     
  17. annunziata

    annunziata Senior Member

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    I think I'm pretty sensitive about the casting of aspersions on CFS/ME, and I thought that the show was damned good. It was 12-minute segment on daytime television, and he treated it seriously -- I thought it represented an enormous leap forward. I'll have to look at it again, but I didn't feel he presented exercise as a solution to retroviral infection. I can't remember when I've seen a physician, other than 'our' team -- Klimas, Peterson, Cheney, etc. -- speak about this disease with respect.

    I am just baffled by the CAA. In so many ways, they seem completely tone-deaf. :confused:
     
  18. jspotila

    jspotila Senior Member

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    I agree that the second Dr. Oz spot was much better than the segment with Dr. Teitelbaum. And I whole-heartedly agree that Dr. Moore did a fabulous job on the show.

    There was a lot of disappointment expressed on the Association's Facebook page after the segment. Some people did think the whole show would be about CFS, and I heard from people about the exercise comment at the end. I think my opinion of the segment was shaped by my expectations. And I have never watched Dr. Oz's show, so I was a little surprised by his tone.
     

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