The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Worldwide premieres of "Unrest"

Discussion in 'General ME/CFS News' started by Sasha, Jan 20, 2017.

  1. Old Bones

    Old Bones Senior Member

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  2. Never Give Up

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

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    Thanks for posting this! She's now corrected Omar's name.

    This is from Jen's twitter feed:
    Would love to know how that went.

    Also, the film festival is live streaming a panel discussion with some of the film makers, including JB, today at 1:00PM MT.
     
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  3. Butydoc

    Butydoc President

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    IMG_1128.jpg
    I am Rina, married to Gary Solomon who suffers from ME/CFS and is the current President of Phoenix Rising. Due to the fact that Gary is a patient of Dr. Lucinda Bateman, we were given

    the opportunity of being invited to a private screening of the documentary film, “Unrest”, (formally known as Canary in a Cole Mine ), at this years Sundance Film Festival. The guests included patients, families, caregivers and doctors. In attendance were Jennifer Brea, actor, director and producer of the documentary, Dr. Lucinda Bateman of The Bateman Horne Center, Dr. Ron Davis from Stanford University and Drs Alan and Kathleen Light from the University of Utah.


    “Unrest” is a heart wrenching and sad account of what it is like to suffer from ME/CFS, and not be understood or recognized by the medical community. Jennifer Brea does an excellent job of bringing to light, not only her story, but those of others, like her, suffering from the same affliction. A disease that robs patients of their lives leaving them alone and trapped in a useless body, wondering whether there will ever be a hope of returning to a “normal” life, one that others take for granted.


    I definitely believe that Jennifer did a great job at turning the spotlight on this misunderstood disease. Her movie revealed an accurate account of the illness and the struggles facing patients and caregivers in a world that does not seem not to care. Moving forward we need to get this documentary seen by as many people as possible with a huge emphasis on the medical community at large.


    Following the screening of the movie, was a brief question and answer period involving representatives from the film and experts on the disease. This was very uplifting as the experts revealed that they are on the cusp of a big breakthrough. When questioned as to the time frame of this discovery, Dr. Davies stated that they will have something by the end of this year. Currently, those experts from the University of Utah will be teaming up with those at Stanford sharing data and information. With the best minds working together, I am convinced that there is huge hope for all of us.
     
  4. Kati

    Kati Patient in training

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    Thank you so much Rina for writing this. Maintaining hope is so ever important for all of us, especially when we are facing for the most part such a hostile environment in health care, beside the very few physicians who have dedicated their lives to treat our kinds.

    I am looking forward to good news. I am also looking forward to the end of the psych lobby era which continues to promote that CBT and GET are the only effective treatments out there. I am looking forward to treatments that work.

    I hope that @Butydoc (Gary) is not suffering from PEM!

    Best, Kati
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    @JenB or @Rose49 Is there a schedule yet of when/where "Unrest" will be showing in other cities after Sundance? I am especially interested if/when it will be shown in Los Angeles? Thank you in advance for any info!
     
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  6. Never Give Up

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

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    @Butydoc /Rina thank you for filling us in on what happened at last night's screening. It is very encouraging to hear that the movie was on target and that Ron Davis believes a breakthrough is coming so soon.

    Do you have any indication that any of the Medical professionals in the audience were unaware of the disease and were becoming enlightened about the severity and impact of ME/CFS and the cruelty often dispensed by medical professionals and society?
     
  7. Never Give Up

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

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    The live streaming didn't work out, but
    I'm looking forward to seeing that video.
     
  8. Denise

    Denise Senior Member

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    If I understood the process correctly, one of the goals at Sundance is to get distributors to buy distribution rights. After that it takes a while for things to get going. Recently I heard that we should hope to be able to see "Unrest" this summer.
     
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  9. Butydoc

    Butydoc President

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    Hi Never Give Up,

    This is Gary. The showing I attended was a special showing which was by invitation only centering around those people who are involved with this disease. I think it is extremely important for health care professionals who have little or no understanding of ME/CFS to see this documentary. Unfortunately this showing probable didn't have those types in the audience.

    Best,
    Gary
     
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  10. Never Give Up

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

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    Thanks, Gary.
     
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  11. Butydoc

    Butydoc President

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    Thank you Kati!
     
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  12. Sasha

    Sasha Fine, thank you

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    On OMF's FB, from Ashley, who is Whitney Dafoe's sister (broken up for ease of reading, my bolding):

    https://www.facebook.com/ashley.halcyone/posts/10155882009289625

    Lovely words from your daughter, @Rose49. :)
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    I cannot wait to see Unrest when it eventually comes to my city! It sounds absolutely phenomenal.
     
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  14. JenB

    JenB

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    "The showing I attended was a special showing which was by invitation only centering around those people who are involved with this disease."

    That's actually not the case. There was the head of a dept at a hospital or university, an MD who brought 30 doctors with him. The Sundance outreach screening brought in a lot of organizations, including Bateman Horne, and did outreach to hospitals, universities, etc. in the local area. I know there were also nurses in the audience. It was by far our best screening and I think a model we will take going forward – not just doing outreach *to* medical professionals, but bringing medical professionals and patients together for a common experience and conversation.

    And I'd say at Sundance, just organically, we had doctors and patients at pretty much every screening, many of whom showed up not knowing what the film was even about. The responses have all been extremely positive. I'm very optimistic about the impact this film will have once we have the opportunity to screen it for more and more people in medicine and science.
     
  15. Butydoc

    Butydoc President

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    Hi JenB,

    Thanks you for the correction. I'm glad that many healthcare professionals did in fact attend that showing. In terms of getting the message out to other healthcare professionals, I would consider medical grand rounds which is usually held monthly at hospitals. Healthcare professionals generally can receive continuing medical education credits for attending these rounds. Almost all teaching hospitals which have residents are required to attend.

    Best,
    Gary
     
    Last edited: Feb 14, 2017
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  16. Sasha

    Sasha Fine, thank you

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    The question will be how those of us who aren't medics can arrange this (for our local hospitals, for instance).

    Any ideas?
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @Butydoc That is brilliant idea and even if not for Grand Rounds, if the film could get clinicians CME or CEU credits for licensing requirements (for docs, nurses, social workers, etc) then you have a whole audience lining up to watch it. Am just not sure of the process to get a film eligible for CEU's?
     
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  18. Butydoc

    Butydoc President

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  19. Butydoc

    Butydoc President

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    Hi Gingergrrl,

    I don't think it is too difficult as long at the department head agrees. Another consideration is resident journal club.
    In teaching hospitals, most residents meet weekly or monthly to review journal articles or other area of interest with their attending physicians. This type of outreach would require an interested attending physician.

    Gary
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Hi Gary, I think these are all amazing ideas! I was an LCSW (social worker) at a teaching hospital before my career ended b/c of this illness. I was wondering how films get certified for the types of CEU courses that other clinicians (nurses, psychologists, social work, OT, PT, chaplains, etc) can take? It would brilliant if all of the multi-disciplinary professions that work together as a team could see the film in addition to the doctors (although I agree that the #1 priority is getting the doctors to see it). I remember getting one CEU per each grand rounds and people being in a rush to get out! But if it was an all day course for six CEU's with a post-test (done in a fun/creative way) then people would have to stay until the end to get credit and they could break into discussion groups, etc. Sorry @JenB if this is getting off track but I think this could potentially really work! I so wish I was in a position to help you (but have not worked since 2014 due to my illness).
     
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