Jennifer Brea is the second person so far to recover from chronic fatigue syndrome (ME/CFS), POTS, mast cell activation syndrome (MCAS) following surgery to correct craniocervical instability - a condition caused by weak ligaments which cause the head to impact the brainstem. Nov 7, ... My thoracic spine and shoulders are now locked in an exaggerated kyphosis—a hunching of my upper back and shoulders — … #MEAction is excited to share two pieces of work from the Writing From Our ME Lives writing group. I’ve always encouraged others, especially patients involved in advocacy, to put their health first, to know when to step back, take a break, or pass the baton. Jennifer Brea: When I grew up, the choice was to identify as black or white She says America now is more open to its multiracial population Obama symbolizes the increasing diversity of … There’s still a long way to go because we need treatment but today I have hope. I was also born with asthma that has turned into COPD and on top of that having problems with my stomach in what I eat and drink, diabetes and so many other problems that can not be explained or treated cause of having a low amune system and being allergic to so many things that go with it and I have severe bad knees that I have pain all the time and I can’t walk long distance without using a cane or having someone walk with me. Susan Phillips, Your email address will not be published. The movie is our greatest voice! Over the last two years I have had to push through more personal crises than I care to count. Our next Executive Director will have the daunting but exciting task of working with our board, staff, and volunteers to envision how #MEAction can best contribute to that new world, and collaborate with all of our partner organizations to fulfill our mission to fight for recognition, research, and compassionate, effective care for people with ME. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. If you are interested in joining the next Writing From Our ME Lives meeting, they meet on every Thursday at 11am PST. Required fields are marked *. I am writing today with some big news. Thanks to Jen and all of you, we know we are poised to continue the work, together in solidarity. Jennifer Brea is an independent documentary filmmaker based in Los Angeles. We, We are excited to announce that #MillionsMissing t-shirts are now available for purchase along with other items in our online stores! Thank You, Bless you. We also have a tremendous amount to learn about how these mechanisms may affect the ME/CFS population as a whole. It felt like a miracle. It’s so humbling. Please use you zip code 3 minutes of your time to ask your Congressional house rep to Cosponsor HR 7057 and help those with Covid19 and the #MillionsMissing, See easy template at: https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00094. I am incredibly grateful for that. I believe you are now reaching a new phase of empowerment with this illness. © 2021 The Myalgic Encephalomyelitis Action Network, All Rights Reserved, U-Turn on ME/CFS Guidelines Could Help Long Covid Patients – Press Release, “Loopholes need closing” – ME/CFS draft guideline community discussion. This community is strong, supportive, brave, and bold. I could walk, I could hike, I could close out the dance floor. We put pressure on US federal agencies, resulting in an historic meeting with NIH Director Francis Collins. Read the full post here. It is a profound experience of submission. I also had the strength I drew from you and from our community. Jennifer Brea was a PhD candidate at Harvard University when flu-like symptoms and a high fever brought her down for more than five years. Her debut feature, Unrest, premiered at the 2017 Sundance Film Festival and received the US Documentary Special Jury Award For Editing. Disbelieved by doctors, Jennifer Brea turns the camera on herself to reveal the hidden world of chronic fatigue syndrome in her film, "Unrest." However, these diagnoses and the treatments for them afforded me the ability to move, think, and exercise without being crushed by the post-exertional malaise, sensory sensitivity, and dysautonomic flares that for so long had become the cost of living. Omar, thank you for standing by Jennifer's side. You have ignited all of us as the army. Please be the healthiest happiest most miraculously radiant future version you have promised yourself to be. You can choose what you want to be kept up to date on. I have learned that life is to short and that you have to take one day at a time and keep looking to the future and to the one’s closest to you and to everyone around that is here to help in some way. Every time I was crashed, bed-bound, or facing a new health crisis, our staff, volunteers, and donors stepped up, the organization grew and, together, the work thrived. Meanwhile, #MEAction has begun the search for our new executive director and we will update you and ask for your help in the search. Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. She is also co-creator of Unrest VR, winner of the Sheffield Doc/Fest Alternate Realities Award. I have a lot of work to do to heal emotionally and physically from all that I have been through, and I’ve reached a point where that has to be my primary focus. I am excited to work with our Board of Directors to find that leader, someone who can help propel #MEAction and our community toward an even better future for the millions who have been affected by ME. Solve ME/CFS’s groundbreaking You+ME registry and our Congressional advocacy collaborations; the massive research network the Open Medicine Foundation has built and funded, along with its new partnerships in Canada and with Emerge Australia; the work of Action for ME, Forward ME and others on Decode ME; PolyBio’s vision to push the frontier of measurement, with their tissue analysis studies and high-resolution neuroimaging; and the emerging long COVID community’s fierce advocacy and patient-led research. Then in March, my husband Omar and I both got COVID-19. Jennifer Brea is an independent filmmaker based in Los Angeles. I look forward to supporting, advising, cheerleading, and amplifying all of that exciting work to come. Jennifer Brea recently announced that her ME/CFS is in remission in a new health update blog!After having a total thyroidectomy last year for stage 1 papillary thyroid cancer, Jennifer’s symptoms were greatly exacerbated, and she experienced new symptoms of flaccid limbs, numb legs, difficulty speaking and thinking, and even a … Once I did that, I got command of my illness and my life — for the most part, it’s never perfect. And please know that while I do not pity either of you, my heart goes out to both of you. On Thursday, Oct. 15, Stanford’s Medicine and the Muse hosted a discussion with Jennifer Brea, an academic turned myalgic encephalomyelitis (ME) activist and independent filmmaker. I stopped, rested, and then very carefully paced. We are gearing up for #MillionsMissing 2021! Unrest VR is an interactive non-fiction experience inspired by Jennifer Brea’s feature documentary Unrest (Sundance 2017 Special Jury Award). Sign up for #MEAction emails to join our movement and keep up to date with all the latest actions and news. In the aftermath, she rediscovered her first love, film. (I am much older.). Thank you, Jennifer. Unrest is made by an award-winning team and is supported by the Sundance Institute, Chicken & Egg Pictures, the Harnisch Foundation, BRITDOC's Good Pitch, the Tribeca Film Institute, the Fledgling Fund, IFP, and over 2,593 Kickstarter backers. I really understand what you are saying and going through from watch your video on PBS. 230. Your story is absolutely phenomenal. Jen, Hoping to shed light on her strange symptoms, Brea grabs a camera and films the darkest moments as she is derailed by M.E. This virus was and is so new, I had no idea if I would recover or how it might impact my health in the long run. COVID-19 was the moment that I finally accepted my fragility. Light. Jennifer Brea's Sundance award-winning documentary, Unrest, is a personal journey from patient to advocate to storyteller.Jennifer is twenty-eight years-old, working on her PhD at Harvard, and months away from marrying the love of her life when a mysterious fever leaves her bedridden. For three months, my lungs would burn with even minor movement. Ask me anything! Now, she … She has an AB from Princeton University and was a PhD student at Harvard until sudden illness left her bedridden. Laurie, Ben, Erin, Holly, Jaime, Hannah and Adriane. She has an AB from Princeton University and was a PhD student at Harvard until sudden illness left her bedridden. I lived in denial and shame until I attended a Millions Missing event. I hope that everything goes well and that you have the strength to carry on with the fight no matter what it is. Words can’t begin to express how much Jen has done for #MEAction and the fight for health equity for all people with ME. I myself may how a form of ME or chronic fatigue syndrome but it would be on top of everything else that is wrong with me. For all of us. Thanks for all you have done for M.E. Whether we are doing public outreach; agency, congressional, or parliamentary advocacy; medical education; or offering each other support in our 100+ local and affinity groups, #MEAction has always been a community of many leaders, committed to building capacity across our entire community. Love you. Jennifer Brea is an independent filmmaker based in Los Angeles. I did not do it alone. Yesterday, I shared the news with our community that all of my symptoms of myalgic encephalomyelitis (ME) are now in remission.This is the outcome of a long journey that began last year with surgery for thyroid cancer; took an unexpected turn for the worse with the sudden onset of a new … Brea suffers from myalgic encephalomyelitis, a form of chronic fatigue that is inexplicably crippling and easily exacerbated. I wish you so grace as you journey inward and focus on your health and healing. Check out our website for the #MillionsMissing timeline of events, grab your t-shirt, and plan a local event! How much you pushed through for the sake of this cause. Jennifer Brea is a Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. One warm day last March, Jennifer Brea ’05 rose from her bed, walked out onto her deck, and lay down. Watch the Sundance award-winning film, UNREST now available worldwide. It turned out to be the beginning of a long illness — including neurological dysfunction and extreme exhaustion — that she has yet to recover from. Synopsis. Archived. This year will be a week long event, from May 9 to 15, of action and activities to strengthen our community, and fight for recognition, research and medical education for myalgic encephalomyelitis (ME). I plan to remain actively involved in #MEAction as a Board Member, and to support and contribute to the work of all our organizations, as I am able, for many years to come. Jennifer gave the highest-rated talk at the 2016 TED Summit in Banff, Canada, the first ever TED Talk about ME. We are so grateful for Jen’s bold vision as our executive director over the past five years. (Courtesy Jason Frank Rothenberg) This … Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. I love what she wrote about rethinking media coverage of Africa. We are very excited to present our next “People in ME/CFS Research” spotlight this week, which is my interview with patient and advocate Jennifer Brea!Jen is a documentary filmmaker who directed Unrest, a film about her experience with ME/CFS, which has received worldwide acclaim and brought much needed recognition to this disease. Her Sundance award-winning, Emmy-nominated feature documentary, Unrest, has screened in over 30 countries and had its US national broadcast on PBS’s Independent Lens. I have always put the work first. Now, it is time for me to pass the baton, to put my body first. Beijing-based blogger Jennifer Brea is one of 100 Fellows attending TEDGlobal. Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. My mast cell activation syndrome (MCAS) flared and began to affect new organs/body systems that had never before been affected. She has an AB from Princeton University and was a PhD student at Harvard until sudden illness left her bedridden. Our collective strength, capacity, and innovation have grown in ways I don’t think any of us could have imagined five years ago. Thank you Jen!! The good news is, I have never felt better about doing so than I do at this moment. Thankyou for all your help thus far .i have very severe ME POTS and allergies and been bedbound completely for 12 years and i could never have done any of the things you have managed .i cheered you on from the wings knowing how hard it would be for you to get out of bed when the inevitable crash would hit .Its because of this organisation and the friends that ive met that i have hope for my future .20 years lost to ME hasnt been easy especially when i had young children .So many times ive wanted to give up but when i would hear aboutthings like the Unrest video and all the onderful things that were being achieved like many others on th ME grapevine ,somehow i too fought for another day .I wish you great endeavors and success for the future wherever it takes you .You are inspirational and now i say if Jen could do it maybe there will be hope for me in the future .Thankyou x. I have hope because of UNREST. My name is Jennifer Brea. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, … Jennifer, you are one brave chica and definitely a hero in my book. I feel so much more seen, heard and understood than I did 5 years ago. In the aftermath, she rediscovered her first love, film. We believed deeply in the collective power of the ME community and the possibility of distributed leadership. I did so in part because of the strategies I have learned being a part of this community. In spite of all these challenges, in May of last year, when I announced the remission of my ME symptoms, I committed to continuing in my role as Executive Director. I have been trying to get what ever help I can for the problems that I have but it’s a work in progress that takes time to do and to get people to understand what is really important with my health. I had surgery for thyroid cancer, which dramatically worsened my symptoms of craniocervical instability, atlantoaxial instability, and tethered cord syndrome. My gratitude is enormous. Jennifer Brea was a PhD candidate at Harvard University when her mind started to fail her. Three years ago, Jennifer Brea, then a PhD student in political science, was struck down by what appeared to be a severe flu. It was a modest outing for someone who had been confined indoors for five months. Somebody has to teach the parrots how to jam to good music after all… lol…. I have learned a lot from you about this disease and that it is definitely different in so many people in so many ways of life. You have truly deeply and immeasurably changed the world for the better and for that I will never craft language expansive enough to adequately thank you. Close. An activist for people with disabilities and chronic illness, she co-founded a global advocacy network, #MEAction and is a TED Fellow. Hope all in US incl MEAction and others can make one last push to pass bipartisan Bill HR 7057 that now has 51 cosponsors, and if we can get more and pass Cosponsors and pass in the next month, would fund NIH R&D for Post Covid19/ME/cfs at $15M/yr 4 years and make a huge difference. Next week, we will officially launch our search for #MEAction’s next Executive Director. These are the decisions that force us to let go make us stronger and lead us to new discoveries. Jennifer Brea is an American documentary filmmaker and activist. Making a film, building an organization, and growing a movement, all while living with moderate to severe myalgic encephalomyelitis (ME), was challenging, to put it mildly. Many leaders Brea suffers from myalgic encephalomyelitis, a form of chronic fatigue is... In joining the next time I comment for having the desire, bold... In part because of you, we are excited to announce that # MillionsMissing t-shirts now... 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