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10

chocolatekissOct 6, 2017

Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis, is a devastating disease which, from patient to patient, manifests itself with a myriad of different symptoms and severity. At its core is unexplained fatigue that neverChronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis, is a devastating disease which, from patient to patient, manifests itself with a myriad of different symptoms and severity. At its core is unexplained fatigue that never leaves and at times can be crushing. Jen Brea, the filmmaker, and star of 'Unrest' is one of the severely ill. Brea becomes bedbound after her Neurologist, unable to explain her symptoms with standardized medical testing, diagnoses her with Conversion Disorder (hysteria) telling her that although her symptoms are real they are coming from her mind and have no biological cause. She walks home from his office ignoring her symptoms only to collapse once home and is then bedridden for 2 years. She begins recording her symptoms and struggles and after launching a Kickstarter campaign spends years filming herself and interviewing patients and researchers using Skype from her bed.

This is very hard to watch it but also tells the love story between Jen and her husband which helps the viewer withstand the brutal patient stories.… Expand

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10

SnoopySueOct 5, 2017

Jen Brea was a student at Harvard when her life was devastated by a disease no doctor could diagnose. Due to a misdiagnosis of "Conversion Disorder" (a modern medical term for hysteria) by her neurologist, she ignored her body's warnings thatJen Brea was a student at Harvard when her life was devastated by a disease no doctor could diagnose. Due to a misdiagnosis of "Conversion Disorder" (a modern medical term for hysteria) by her neurologist, she ignored her body's warnings that something was physically wrong. Walking home from the doctor she collapsed and spent more than 2 years in bed suffering from crushing fatigue, inability to care for herself, and neurologic and cognitive issues. She created a video diary that led to this documentary which includes several skype interviews with other patients and researchers.

In the US the disease is often called "Chronic Fatigue Syndrome" (CFS) but in the UK and much of Europe, it is called "Myalgic Encephalomyelitis" (ME) and now goes by the acronym ME/CFS (or CFS/ME).

At first, Brea thought she had a rare disease but through social media finds that millions around the world are also suffering like she is. At least one million in the US are sick with no treatment options available. The disease's stigma (often viewed as a mental health disorder) within the medical field as well as government health organizations and the general public have made it nearly impossible for medical research to move forward. (Since the documentary's release, the National Institutes of Health (NIH) has awarded several Centers of Excellence millions to research the biomedical cause of ME/CFS and the Centers for Disease Control (CDC) has removed Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) as treatments from its website. The CDC has also changed the name from CFS to ME/CFS. These organizations are responding to the Institutes of Medicine's (IOM) 2015 report on ME/CFS.)

'Unrest' chronicles not just the disease and its impact on those afflicted but the close and loving relationship with Jen Brea and her husband Omar Wasow, her caretaker, and how their professional goals and personal relationship have had to evolve.… Expand

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10

xoxo_HeidiOct 5, 2017

This is not an easy to watch documentary but necessary for those working in healthcare as clinicians, surgeons, and support staff as well as government healthcare organizations and the families and friends of patients to understand theThis is not an easy to watch documentary but necessary for those working in healthcare as clinicians, surgeons, and support staff as well as government healthcare organizations and the families and friends of patients to understand the struggles faced by those who are suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Jennifer Brea brings you into her world by turning the camera on herself as she struggles to get out of bed, crawls on the floor to get around, and interviews patients and scientists in order to explain her disease to the viewer. She is one of the severely ill but the disease that impacts up to one million in the US and millions more worldwide can differ in severity from patient to patient and can fluctuate in severity over the years and decades. There are no approved treatments.

Ms. Brea and her husband Omar Wasow struggle together to find a new path for their once very promising lives both professionally and personally. Social media led her to find many others that have been ill for decades, some involved in advocacy and a handful of researchers working with very little money for many years.

The documentary has had a positive impact on mass media who until recently reported negatively of the patients (malingerers, lazy) and incorrectly on the disease as a mental health issue and supporting the bad research which ultimately promoted exercise as treatment when in fact exertion, physical or mental, makes the patient worse. Brea herself collapsed after a walk home from her doctor and was bedridden for more than 2 years. She has not returned to her former unwell health prior to that walk home and now uses a wheelchair. When able to sit up must keep her legs tucked underneath her so blood does not pool to her feet as she also has POTS (often a comorbid of ME/CFS). Ms. Brea has now found a new career path in her documentary filmmaking as well as advocacy for funding research.… Expand

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9

signe3Oct 10, 2017

This review contains spoilers, click expand to view. [partial review]

It's Canadian Thanksgiving today, an interesting day for me to be writing this review. My caregiver said her family calls it "You're Welcome" day instead because they’re native, and we all know the story there. I thought that was quite generous, and there is a parallel to that phrase provoked in my feelings by the film which will hopefully articulate itself if I keep writing.

I am thankful that so many people around the globe pulled together to make this film happen because I think it's a very important start in telling the ME story. I'm thankful that Jen told her story openly, intimately, and viscerally with her own unique and exalting qualities of optimism and persistence in fighting for a life worth living.

The film needed a personal vantage point to engage audiences and that's exactly how Jen created it, by starting with what she knew -- herself. She tells her own story through showing and telling it directly, but also through the use of some of her own archetypes represented in the patient stories. There were parts of the film that I found very difficult to watch as a person with ME (pwME) -- namely the Princeton parade scene and Jess sitting up in bed and then relapsing, as I had gone through exactly the same. Since I'm also a pwME the film raised myriad and often confounding feelings. I was envious of Jen for being able to crawl up the stairs time and again. The last time I crawled up the stairs was 15 years ago; I have not been able to go up or down since. I was envious of her level of functioning and ability to recover relatively quickly. I was grateful for her tears, candidness and authenticity. My heart was warmed by Omar’s love, wisdom and ability to articulate. I was irritated with Dr. Peterson for calling it “chronic fatigue” and not even “chronic fatigue syndrome”. I appreciated the artistic merit shown especially in the the way passage of time was displayed. My heart broke for Karina’s family. I’m left to assume she’s doing better than when she was laying in her darkened room since we see her sitting on her bed, fully dressed and engaged in an activity. I was struck acutely by how Jen and all the featured patients had family and/or friends around supporting them. Yes, Leeray's husband left for a time, but she always had her girls to keep her going. They also all had homes and none were in financial crises, nor did they have to resort to outside agencies for care, which is yet another nightmare of a situation and deserves a film on its own.

As far as Maslow's Hierarchy of Needs is concerned, ME patients generally don't fare too well here where the basic physiological needs for food, water, warmth and rest are the foundation. Jen herself definitely had the ability to have these covered, along with the second stage of safety and security. Not only that, but Jen was able to fulfill all 5 stages of the pyramid including love and belonging needs, esteem needs and even self-actualization through making UNREST. This is highly atypical of the social situations and functional abilities of most people with ME and I want the general public to recognize that.

Jen has been criticized for this as being privileged, but this "privilege" is what allowed her to make such a great and important film. But, it is just her story. While this is a fantastic start, I must speak up for all the pwME who are struggling to get food, water, warmth, housing and rest needs met. There are thousands of us without homes (or Airstreams) who are living in tents in the desert, nursing homes, hospitals, cargo trailers and cars who are often freezing, isolated and desperate. There are thousands of us who can't swallow food, keep it down or even get parenteral nutrition as Whitney does (which is far from ideal in itself, but it keeps his needs met as best as they can be at the moment). There are thousands of us who are alone, without family or friends. There are thousands of us not getting our basic emotional needs met or who are being abused. There are thousands of us who rely on caregivers that don't show up to help us eat or pee or change our stinky pee sheets from the time the previous caregiver also failed to show up. There are thousands of us who don't know where next month's rent will come from, or even where the money for food will come from, let alone the money for heating, cooling, care, or assistive devices. There are thousands who do not have access to basic necessary medications like thyroid pills (and I'm not even talking about the likes of Valcyte, Rituxin or Ampligen here). I do not expect Jen to cover all these things as they’re not part of her narrative, but I feel obliged to because it has been the narrative of most of us at some point.

So yes, as I am here alone and not eating on a holiday known for togetherness and feasting, I am profoundly aware that we are millions missing. But, even more so, at this moment I'm feeling we are also thousands missing from this film.… Expand

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10

LollyVOct 11, 2017

Ground Breaking and for the Millions of under severed patients around the world maybe a game changer. Ms. Brea gives a face and articulate voice to a serious illness shoved into the shadows by the medical researchers charged with keeping ourGround Breaking and for the Millions of under severed patients around the world maybe a game changer. Ms. Brea gives a face and articulate voice to a serious illness shoved into the shadows by the medical researchers charged with keeping our citizens healthy. This movie provides a glimpse of her coming of age in the face of a complex not well-understood illness with grace, humor, and determination. She is not alone in her search for medical help and introduces a few of the other patients and researchers in her quest for appropriate medical assistance as she learns to redefine her own personal gifts. This film I expect will stand the test of time among a handful of projects turning the tide and attention toward this often misunderstood, poorly investigated serious illness. Very well done.… Expand