Old Bones
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks for posting this! She's now corrected Omar's name.Here is a first critique from an audience outside our community. This is what matters most to me, how the public not in any ways attached to our community will review the film, and whether they would recommend it to others to watch. What matters most is the impact it has outside our community. The theaters need to fill with members of the general public, med schools, medical associations, researchers, policy makers.
https://www.bleedingcool.com/2017/01/23/sundance-2017-unrest-emotional-watch/#comment-anchor
Kaitlyn gives a 8.5 stars out of 10
Exerpt:
Read more at the link above.
P.S. she mistakingly calls Omar, @JenB 's husband, Oscar.
- jen.breaAt the #unrestfilm Sundance community outreach screening in Salt Lake City last night with patients, caregivers, doctors, nurses, hospital administrators and many from the Bateman Horne Center. One of the most profoundly moving experiences of my life. My profound gratitude to our incredible community. #sundance2017#mecfs #pwme #spoonie
Sundance Now
January 21 at 1:00pm ·
We'll be LIVE-STREAMING our second panel from the Sundance Film Festival on Monday Jan 23rd!
Tune into our FB page at 1pm MT/3pm ET for our "GETTING EMOTIONAL WITH DOCUMENTARIES" discussion with 4 filmmakers who are debuting their documentaries at #Sundance 2017.
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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 givenI will also be in attendance and will write a post about the event a few days later.
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.View attachment 19267
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.
Sundance Now Sorry folks, due to some technical difficulties, we're now unable to live stream this today () but we'll be providing a video from the event soon. Please stay tuned!
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Hi Never Give Up,@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?
Thanks, Gary.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
Thank you Kati!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
Ashley Haugen said:I had the privilege of being able to attend Sundance last week for the premiere of Unrest, a documentary about ME/CFS. I returned at the end of last week and have spent the last few days trying to put into words the experience in order to share with all of you.
But I find myself at a loss. This documentary is so beautiful, so moving, I found myself crying every single time I saw it. I am at a loss for words for what this will do for the victims of this disease. I call them victims because this disease takes everything.
t takes their entire lives, leaving them on the brink of death for sometimes 30 years, often times loosing all of their friends and family to disbelief along the way and with little to no acknowledgement from the medical community.
But this documentary proves to those not in the ME/CFS community that this disease is real, people are dying, lives are being taken away, and we will never stop fighting until it receives the attention, respect, and funding that it deserves. All I can say is thank you to the creators of this documentary and thank you for including my family.
As my brother becomes a little bit worse every day I still find myself feeling hope for the first time. I know my dad, Dr Ron Davis, can solve this with time and funding, and for the first time I see a light shining from the outside world into this community of forgotten lives.
Hearing the opinions in the audience go from skeptical of CFS upon entering the theaters to tearful and horrified for the victims of this disease was an amazing thing. I got to see the change this film will have on the public right before my eyes.
I can't wait to help share this film with the world and to start spreading more awareness in the name of my brother and for everyone who suffers.
"Cynicism and disbelief are what enable this disease to ravage so much human talent.
For too long, no one took these patients seriously.
For too long, no one has been willing to fund research into this disease."
Hi JenB,"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.
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 requires to attend.
Best,
Gary
The question will be how those of us who aren't medics can S
Hi Sasha,
Probably this will require some nurse or physician who knows the department head ( generally the chairman of medicine ) to convince them to show this documentary. If I had access to this film, I'm fairly sure I would be successful in getting it shown at my hospital. I'm not sure what restrictions JenB has since I believe PBS has picked up this film for it's 2018 season.
Gary
Hi Gingergrrl,@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?
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.