http:// Approx. 2.5 Min
Filmmaker Jennifer Brea captures her struggle with Chronic Fatigue Syndrome (M.E.) while connecting with others she meets along the way.
About the Film
Filmmaker Jennifer Brea was a Harvard PhD student soon to be engaged when she was struck down by a mysterious fever that left her bedridden. As her illness progressed she lost even the ability to sit in a wheelchair, yet doctors insisted it was “all in her head.” Unable to convey the seriousness and depth of her symptoms to her doctor, Jennifer began a video diary on her phone that eventually became the powerful and intimate documentary, Unrest. Once Jennifer was diagnosed with myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS), she and her new husband, Omar, were left to grapple with how to shape a future together in the face of a lifelong illness.
Refusing to accept the limitations of life in bed, Jennifer embarks on an online voyage around the world where she finds a hidden community of millions who have disappeared from their own lives, confined to their homes and bedrooms by ME. Using the internet, Skype, and Facebook, these disparate people connect with each other, finding a much-needed sanctuary of support and understanding.
At its core, Unrest is a love story. Though Jennifer and Omar may never live the life they originally dreamed about, together they find resilience, strength, and meaning in each other and their new-found community.
To watch on Netflix: https://www.netflix.com/title/80168300
http:// Approx. 7 Min.
Filmmaker Opens Up About Illness That Doctors Told Her Was ‘All in Her Head’
I saw many persons who had been diagnosed with chronic Lyme. The symptom pattern, along with the onset pattern, response to antibiotics, and questionable laboratory results led me to believe that there was no difference between ME/CFS and chronic Lyme. I have no doubt, however, that some persons with ME/CFS have their disease initiated by the Lyme organism…That is why over the past twenty years we have been talking of enterovirus, mycoplasma, and many other organisms. I have seen patients with ME/CFS following Histoplasmosis, Psittacosis, and other strange bugs….So, I believe that chronic Lyme is ME/CFS that is initiated by the Lyme organism. Whether this is true or not, we should know in a couple of years with the research that is bound to follow Drs. Fluge and Mella’s discovery. -By David S. Bell MD
This technology is only as good as those inputting the markers and in the case of Lyme/MSIDS there is a vast polarization in the medical community of those who believe it to be a benign illness cured by 21 days of doxycycline and those who believe it can infiltrate every organ of the body eventually leading to potential death without proper long-term treatment. Technology must include all sides and it must adapt and change to new information.
My other concern is that doctors use this as only one of many tools in their differential diagnoses because particularly with Lyme/MSIDS, people fall through the cracks due to “atypical” or “rare” presentations. In my experience these aren’t “atypical” or “rare” at all but have simply not been reported on – therefore, doctors and researchers just aren’t aware of them. In the case of Lyme/MSIDS the worst thing a researcher could use would be old Lyme/MSIDS research (and yes, even new meta-analysis from past research) as that would only represent the Lyme Cabal and their pigeon-holing this complex illness into a square of their own making which leaves out a huge chunk of suffering patients. They also smugly state that this chunk is only 10-20% of patients. Microbiologist Holly Ahern recently wrote a paper showing it’s more like 60% that are chronically affected: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/
To join a group whose mission is to Advocate for Recognition, Definition, & Research for Myalgic Encephalomyelitis: https://www.meadvocacy.org/about, MEadvocacy is a project of May12.org