#MEAction
For Support
For Research
For A Cure

Netflix executives need to hear from as many people as possible that the the problems with this film are real and serious. The participants are already suffering for their participation, receiving intense online harassment, having their professional reputations questioned, and having friends turn against them. And if “Afflicted” remains on Netflix, it will hurt many more people. Many people living with chronic illnesses, including those depicted in “Afflicted”, are routinely denied disability benefits. Some are abandoned by their families and fall into poverty, homelessness, and food insecurity when they become too ill to work. The stigma surrounding these conditions among health care providers poses a barrier to accessing quality medical care, putting patients at risk. The disbelief of loved ones—and the culture at large—contributes to the high rates of suicide among patients with these conditions. Add your voice to the original group of writers, activists, artists, filmmakers, physicians, scientists, and several "Afflicted" participants who have signed an open letter to Netflix executives. Read the here letter here: https://medium.com/@afflicted/open-letter-to-netflix-regarding-the-afflicted-docuseries-d2b5263c9eb6 ORIGINAL SIGNERS TO OPEN LETTER: Sini Anderson Documentary Filmmaker "The Punk Singer" and "So Sick" Jennifer Brea Filmmaker, "Unrest" Mario R. Capecchi Distinguished Professor University of Utah School of Medicine Department of Human Genetics Lawrence Carter-Long Director of Communications Disability Rights Education & Defense Fund Bela Chheda, MD Center for Complex Diseases Laurel Crosby, PhD Director of Innovation CFS Research Center Stanford Genome Technology Center Janet L Dafoe, PhD Child Psychologist in Private Practice Palo Alto, California, USA Ronald W. Davis, PhD Professor of Biochemistry and Genetics Stanford University Lena Dunham Writer, Actor, Director, Producer Maya Dusenbery Author, "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick" Eva Hagberg Fisher PhD Candidate, UC Berkeley Author, "How To Be Loved: A Memoir of Lifesaving Friendship" Maureen Hanson, Ph.D. Professor of Molecular Biology and Genetics Cornell University H. Craig Heller, PhD Lorry Lokey/Business Wire Professor of Biology and Human Biology Stanford University Judith Heumann Disability Rights Advocate Ford Fellow, Ford Foundation Ally Hilfiger Designer, producer, author "BITE ME" Deborah Hoffmann Documentary Filmmaker David L. Kaufman, MD Center for Complex Diseases Porochista Khakpour Author, "Sick: A Memoir," "The Last Illusion," and "Sons and Other Flammable Objects" Nancy Klimas MD Director, Institute for Neuro-Immune Medicine Nova Southeastern University Director, Miami VA Medical Center GWI and CFS/ME Program Miami, Florida, USA Jim LeBrecht Documentary Filmmaker Board Member at Disability Rights Education and Defense Fund Michele Lent Hirsch Author, "Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine" Monica Lewinsky Anti-bullying activist and writer Mohsen Nemat-Gorgani, Ph.D. Research Scientist, Stanford University Jenara Nerenberg UC Berkeley journalist Founder, The Neurodiversity Project Abby Norman Author, "Ask Me About My Uterus" Meghan O'Rourke Author, "What's Wrong with Me?" and "The Long Goodbye" Robert D Phair PhD Chief Science Officer Integrative Bioinformatics Inc Mountain View, CA Anand Ramasubramanian, Ph. D. Associate Professor Chemical & Materials Engineering San José State University Julie Rehmeyer Author, "Though the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand" Contributing Editor, "Discover" Frances Reid Documentary Filmmaker Amit Kumar Saha, PhD Research Engineer Stanford University Peidong Shen, PhD, Scientist Stanford Genome Technology Center Lars M. Steinmetz, PhD Professor of Genetics Stanford University School of Medicine Ronald G Tompkins, MD, ScD Summer M Redstone Professor of Surgery Harvard Medical School Director, Center for Surgery, Innovation & Bioengineering, Massachusetts General Hospital, Boston, MA. Michael VanElzakker, PhD Research Fellow, Psychiatric Neuroscience Division Harvard Medical School & Massachusetts General Hospital Instructor, Tufts University Psychology Alice Wong Founder and Director Disability Visibility Project Wenzhong Xiao, Ph.D. Immune-Metabolism Computational Center Massachusetts General Hospital Harvard Medical School Maysoon Zayid Comedian, Writer, Disability Advocate "AFFLICTED" PARTICIPANTS: Jesse Bercowetz Artist and Masters candidate Harvard Divinity School Nick Dinnerstein Musician, Music teacher Brother of Bekah Dinnerstein New York, NY Jill Edelstein LCSW Psychotherapist/Clinical Social Worker in Private Practice New York, NY, USA Janine Feczko Documentary Film and Television Editor Jamison Hill Author, Freelance Writer Bylines: "The New Tork Times" "The Los Angeles Times" "The Washington Post" Pilar Olave Actress/Musician/VoiceOver Artist Los Angeles, CA Star Rinaldi Jake Sidwell Composer, "Final Space" Nashville, TN

The CDC is repeating a terrible mistake. They are attempting to quietly hire The Pacific Northwest Evidence-based Practice Center (EPC), at Oregon Health and Science University, for a sole-source contract to help them develop new federal guidelines for ME treatment (https://www.fbo.gov/spg/HHS/CDCP/PGOA/25153/listing.html). Unfortunately, this same contractor was hired four years ago to do a similar literature review of the evidence base for ME treatments by a CDC sister-agency, the Agency for Healthcare Research and Quality (AHRQ). The previous EPC project turned out to be a years-long struggle for the ME community. Advocates pointed out the problems with the unsuitable literature used to produce EPC’s work over and over, only to be repeatedly brushed off. When the EPC published its report in 2014, it included recommendations for GET and CBT and concluded that PACE was a good trial with little bias! Only through the dogged work of many ME advocates and an #MEAction petition to CDC and AHRQ (https://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace) did EPC finally issue a reanalysis TWO YEARS LATER. However, they still refused to publish this 2016 addendum in a peer-reviewed journal, making their conclusions effectively invisible to developers of treatment guidelines for ME. This is not a contractor whose expertise or quality of work the CDC should trust. We have very little time. The CDC is trying to rush through this sole-source contract of EPC with a minimum time for us to respond. We only have until August 31, 2018. That’s FRIDAY! FRIDAY. We have to stop this. We have no intention of letting history repeat itself without a fight. Sign this petition to demand that the CDC not issue this contract, put the project on hold, and meet with #MEAction immediately to assure us they will: 1) Create a TRANSPARENT and COLLABORATIVE approach to future guidelines for ME that engages advocates and community representatives; and 2) Include experienced ME researchers and expert practitioners in any process that leads to treatment recommendations for ME. We need you to take this urgent action today. EVERYONE can SIGN and SHARE this petition to the CDC, including those living outside the US.

Myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is a systemic neuroimmune condition that causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound. An estimated 15-30 million people around the world are suffering from ME. Approximately 75-85% of them are women and 80-90% of them are undiagnosed. The human cost of the current medical and policy neglect is tremendous. At the “mild” end of the spectrum, patients who still work may lose 50 percent of their previous function. Others are forced to abandon careers they loved - and the ability to support themselves and their families. Twenty-five percent of patients are shuttered in their homes or trapped in bed. At the most severe end of the spectrum, patients may live the rest of their lives in darkened rooms, unable to tolerate light, sound, or human touch. Only 4-8 percent fully recover. ME medical costs and lost productivity result in an estimated US $20 billion each year. In the US and the UK, there have been numerous cases of children being taken away from their parents and placed in foster care. In Europe, some severely ill patients have been forcibly institutionalized. Despite this incredible social cost, research is severely underfunded by governments across the globe. That is why we call on every government in the world to formally recognize ME and sufficiently fund research at the levels needed to treat and, ultimately, find a cure. ---------- ME Research Funding Statistics Around the Globe: 1) In the US, ME research funding is between $3-8 per patient per year. A similarly disabling disease such as multiple sclerosis receives about $242 per patient per year. 2) In the UK, MS has received 20 times the funding as ME. 3) In Canada, where 1.9% of the Canadian population have been diagnosed with ME, funding for ME patients averages around 11 cents per patient. 4) In Australia, approximately AUD 110,000 is allocated to ME/CFS each year.