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PBS Airs Show On "CFS" And Posts It On YouTube

Discussion in 'General ME/CFS News' started by Never Give Up, Oct 14, 2015.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    http://secondopinion-tv.org/episode/chronic-fatigue-syndrome

    A patient and her husband do a good job of expressing the severity and impact of the disease. Dr. Enlander chimes in. The viewer is left with the impression that the disease sucks. They mostly use the term Chronic Fatigue Syndrome, but do bring up the term ME.

    And Public awareness continues to build. Yay!
     
  2. Hutan

    Hutan Senior Member

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    Danielle, the patient, was awesome and Dr Enlander threw some medical terminology around in a way (cytokines, immunological dysfunction) that helped to consolidate the message of this being a real, serious illness.

    There was one moment where they broke out to another presenter to discuss 'is CFS a psychological illness?' and the answer came across as rather equivocal. Talking therapy was mentioned. CFS somehow morphed into depression in a way that wasn't helpful (something like depression can prolong the symptoms..)

    But overall, this was a really useful programme. Congratulations and thanks to all who made it happen.
     
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  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Yes, they said that talk therapy can help...
     
  4. alex3619

    alex3619 Senior Member

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    Danielle and Tyrone (I hope I recalled their names correctly) were great. Mostly its a good video.

    The myth or medicine segment was at least partly myth though.

    I think this is an older interview. I did not see a date but the myth or medicine segment has been around a good while.
     
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  5. Sidereal

    Sidereal Senior Member

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    Are you sure? One of the panelists mentioned the IOM report so it can't be that old.
     
  6. Nielk

    Nielk

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    This was taped this month.
     
  7. Bob

    Bob

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    I think the interview is new but the myth or medicine segment is older.
     
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  8. Bob

    Bob

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    I think that is a most excellent feature. I was really impressed with it. The patient is an excellent advocate. The host was great. Dr Enlander was great. And they portrayed all aspects of the illness very helpfully and accurately. The only let-down was the stupid myth-or-medicine segment (bow-tie-man) which was insulting, ignorant, and put together sloppily. That was a bit of an insult to the rest of the program. It seemed like some older archive material that they decided to slip in that got past quality control.
     
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  9. beaker

    beaker ME/cfs 1986

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    They meant just the cut away segment called "myth or medicine" not the whole show.
     
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  10. beaker

    beaker ME/cfs 1986

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    I thought the patient and her husband were great ! Congrats and thanks to you Danielle and Tyrone where eve ryou are. They said they came a couple days early so they can't be from Rochester where it was filmed.

    Yeah, bow tie man ( I like that ) really needs to be edited out. I have his email actually, and have thought of sending him some updated material. It really didn't fit in with the rest of the show. And in fact they (thankfully) contradicted him. He seems to be a doctor w/ a point of view instead of facts.
     
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  11. shannah

    shannah Senior Member

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    Overall quite good, except as mentioned, the segment on 'Myth or Medicine'.

    In the final segment, Dr. Lisa Harris says, "Overall, these patients do not worsen." Seems like this is statement straight out of the '80's when they tried to brainwash us into believing this was true! That simply is not true for so many of us. I wish they would acknowledge that there is a portion of patients that do, in fact, worsen over time.

    It's a little unusual that the show is American yet the guest, Danielle Warner and her husband, are Canadian. She says she sees a naturopath in Toronto that has helped her quite a lot. I wonder who?????
     
  12. shannah

    shannah Senior Member

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  13. Bob

    Bob

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    I actually emailed them about the bow-tie-man section a few weeks ago saying that the information was incorrect and based on out-of-date minority views about the illness, and I sent them the IOM report as evidence. They never replied. (The myth or medicine segment had previously been used in their publicity material for this show - that's why I knew that it wasn't new.)
     
    Last edited: Oct 16, 2015
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  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    Poor bow tie man. His ignorant views are out there now in perpetuity (or close enough).
    What if bow tie man has had a change of heart? What if BT man has actually been able and willing to decipher the writing on the wall and realise the views he held in that piece are complete rubbish?
    You can burn every copy of a book (in theory) but until the giant apocalyptic magnetic pulse you can't scrub the internet.

    Once again, a bright spot of good news (mostly). Now how do we go about convincing Europe (and Canada which seems to follow E's lead on this) to catch up with the program. Yes I know there are a few strong voices of hope for us in E but I don't think the tide has turned there.
    There are still some very backward things happening there. Backward being a code word for things unspeakably heinous.
     
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  15. Forbin

    Forbin Senior Member

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    I was going to make a joke about the "Myth or Medicine" segment being "on the cutting edge of 1990" since that's the year that the Journal of the American Medical Association (JAMA) first published an article on the incidence of prior depression in CFS (it was an article mainly about negative EBV findings).

    Impressively, those authors drew their conclusions from just 26 patients (half had prior depression). This at a time when the 1988 CDC definition (Holmes) would actually have excluded those with a psychiatric diagnosis, so I'm not sure exactly how they selected their patients. http://www.ncbi.nlm.nih.gov/pubmed/2162397

    It may be worth noting that the professor who hosts the "Myth or Medicine" segment also serves as director for the second year medical student "Mind, Brain and Behavior" course at University of Rochester Medical Center.
     
    Last edited: Oct 16, 2015
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  16. Forbin

    Forbin Senior Member

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    Just thought I would follow up my previous post about the 1990 JAMA article with this info.

    I just re-read the original JAMA article (I had a hard copy of it in my files) and the study was on "chronic fatigue" and not CFS. The authors note this at the end of their paper, saying that their patients were selected prior to the establishment of the 1988 CDC (Holmes) criteria. Looking at their own study in light of the new definition, they found that only 6 of their 26 patients met the "stringent criteria" for CFS. They maintained that their paper was still of value for doctors with patients who fell into the broader category of those who did not meet the CDC definition.

    The incredible thing about this study, however, was how widely it was reported as showing that depression was linked to CFS, not chronic fatigue, with headlines such as these that I found on the internet:
    Opening of the UPI version for the story:
    This was all dead wrong, but was so widely publicized (I saw it reported on by my local television news in San Francisco in the summer of 1990) that the mischaracterization probably caused reverberations (i.e. prejudices) that last to this day.
     
    Last edited: Oct 16, 2015
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  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    LOL. I think there is some investigation into viruses causing depression.
    It sort of suggests that scientists and science reporters need to be a quantum level of more circumspect when it comes to drawing conclusions about pretty much any finding. Combine that with how much research is just crap to start etc. A lot of tidying up needs to happen in the house of science.
     

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