The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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NIH Director Francis Collins on PBS Charlie Rose

Discussion in 'General ME/CFS News' started by Rrrr, Nov 5, 2015.

  1. Rrrr

    Rrrr Senior Member

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    Francis S. Collins (@NIHDirector) Twitter Account said:

    https://twitter.com/NIHDirector
    16 hours ago
    Had a great discussion with @charlierose about all things #NIH. You can catch it tonight at 11pmET on @PBS.

    * * *

    A friend saw it last night and said Collins mentioned "a profoundly disabling fatiguing illness" and they are going to start researching it. Did anyone else see it?

    The full video is not yet online at CharlieRose.com (they seem to be 2 days delayed in getting videos up). But there was a clip here, which I have not yet watched:

     
    Sean, waiting, rosie26 and 9 others like this.
  2. Never Give Up

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

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    This clip is about cancer immunotherapy. Looking forward to seeing the rest.
     
    mfairma likes this.
  3. Mary

    Mary Senior Member

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    @Rrrr - wow - that looks potentially very interesting! look forward to seeing it - thanks for posting -
     
  4. ghosalb

    ghosalb Senior Member

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    It is on wmht (PBS Albany) right now 1-2 pm. If it was on PBS yesterday, it will be repeated on Bloomberg at 7 and 10 pm again tonight. He spent may be one minute on CFS but his description of it was pretty good.
     
    Last edited: Nov 5, 2015
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  5. Denise

    Denise Senior Member

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  6. frenchtulip

    frenchtulip Senior Member

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    I saw the show, and it was great to see Charlie ask a question about CFS. I think I will send him a thank you.
     
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  7. Never Give Up

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

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    Great idea!
     
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  8. Denise

    Denise Senior Member

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    I wonder how it is that Charlie Rose asked Collins about ME and NIH...
     
  9. JohnnyD

    JohnnyD Senior Member

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    Charlie keeps up with recent developments re: the NIH announcement on Oct 29th.
     
  10. mfairma

    mfairma Senior Member

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    Thanks, Denise.

    The part about CFS starts around at around 7 minutes left of the video. Sorry if that sounds cryptic, but that's the only time stamp I see on mobile.

    It was a brief mention, as others noted. He certainly comes off as affable, forthright, and caring. That counts for something and may suggest that we can get him on the right page, if he is not already there.

    That said, I wasn't crazy about what he had to say. His brief discussion of the IOM struck me as either ignorant or deliberately concealing. He could have come out and said, "Look, we, in government, have screwed up on how we approached and defined this disease and we are now trying to right that wrong," but what he said instead made it seem like the IOM brought some new discovery.

    It was a great opportunity to force alignment of other governmental agencies on how this disease is managed, which he chose not to take.
     
    Denise likes this.
  11. Denise

    Denise Senior Member

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    Charlie Rose brings up ME at about 16 minutes into the video (so as @mfairma says, about 7 minutes remaining).

    And while Collins did say patients are disabled, bedbound and this is serious stuff, he also spoke (again) about what we can learn from ME fatigue.
    If ME fatigue is all NIH is going to study, the study will fall far short of what we need and deserve.
     
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  12. Never Give Up

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

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    Perhaps he's trying to sell the advantages of ME research for the much wider group of significantly fatigued people and those who know them. We can use all of the support we can get.
     
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  13. SpecialK82

    SpecialK82 Ohio, USA

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    This is so great, thanks for posting!!
     
  14. ghosalb

    ghosalb Senior Member

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    He is suggesting that studying this decease may shed light on cancer fatigue, which I think many more people can relate to and will support. He did not get that job without political skills. Let's see......
     
  15. JAH

    JAH Senior Member

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    I heard him on Sirius,xm, mentions it right after the second break, I think. On demand if anyone gets Sirius

    I thought he was great - summed up the illness accurately, referenced severity. I'm bedridden today and the director of the NIH actually knew I existed, and seemed to give a sh*t. Improvement.
     
  16. Webdog

    Webdog Senior Member

    I agree. By equating with cancer, Collins appears to be publicly validating ME/CFS as a real disease.
     
  17. jimells

    jimells Senior Member

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    Thanks for the recap. Personally I can't stand Charlie Rose and would rather watch the test pattern.
     
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  18. Forbin

    Forbin Senior Member

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    Transcript:

    Charlie Rose:
    I saw something - it may have been associated with NIH - about chronic fatigue... Did you write something?

    Francis Collins: Yes, this just happened. So...

    CR: That's what I thought (chuckles).

    FC: I've been, I've been puzzled and frustrated about how little we understand about this condition. Now, just as... here's a theme we've been talking about the whole time. Yeah.

    But chronic fatigue syndrome - people who have that diagnosis... it's a very heterogeneous collection of individuals, but The Institute of Medicine has just sort of defined what we should sort of limit it to is people who are profoundly affected by fatigue, often times coming on after an acute...

    CR: What do you mean by profoundly affected?

    FC: Can't get out of bed.

    CR: Oh.

    FC: You are disabled. You're utterly unable to carry out daily activities... You have other things which - exertion seems to make you worse instead of better. And you have sleep disorders. Sleep is not refreshing as it should be. You may have postural hypotension where you stand up, your blood pressure drops, and then you pass out.

    CR: This is serious.

    FC:
    Serious stuff. And it's particularly frustrating to see cases - and there are hundreds of thousands of them - of people who were healthy and then have what appears to be just a flu-like illness, but they go to bed and then they can't get up for months.

    So, we just announced that we are going to make a big push to try to get the answer here. Bring some of these new technologies of genomics and proteomics and metabalomics and imaging and figure out what is going on in this condition. And if we understood that, maybe we'd know what fatigue of other sorts is all about. Why do people on chemotherapy get fatigued? We don't really know. Wouldn't it be nice to have that answer? There are so many things we can start to ask about with the technology we have in front of us now.
     
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