• Remove "Afflicted" Docuseries from Netflix Now
    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. David Tuller, DrPH Senior Fellow in Public Health and Journalism Center for Global Public Health UC Berkeley 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
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  • Don’t Hire Shoddy Contractor: ME Treatment Guidelines Need Community, Expert Input!
    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.
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  • STOP GRADED EXERCISE THERAPY TRIALS FOR ME/CFS
    Hundreds of patients have reported harm — some becoming housebound or bedbound, indefinitely — from graded exercise therapy (GET). Objective criticism from scientists and journalists have argued that there is no correlation between participation in GET and recovery. Yet public resources continue to fund trials such as MAGENTA, a UK trial of graded exercise therapy in children ages 8-17. After the feasibility study on 100 children is completed, MAGENTA will likely expand to a larger trial, with more young patients recruited. MAGENTA’s public documents, including the participant-information sheets given to prospective patients and their parents/carers in the feasibility trial do not convey the magnitude of the harm reported by patients. A document addressed to parents reads “We have used both treatments [GET and activity management] in our service and we are not aware of side effects. Studies in adults have also not shown that there are any side effects.” Therefore, the children in MAGENTA and those responsible for their well-being may not have given adequately informed consent. The rationale for performing additional GET studies in ME/CFS such as MAGENTA rest on the shoulders of the fundamentally-flawed PACE trial. PACE’s flaws are so well-known and so profound that over 40 scientists and doctors, including pediatricians, have signed an open letter stating that PACE’s “major flaws... have raised serious concerns about the validity, reliability and integrity of the findings”. Thousands have demanded retraction of PACE’s “misleading” analyses and 24 ME/CFS charities in 14 countries have demanded that its data be released for reanalysis: PACE is no basis for a trial in children or adults. Please sign now, and share this petition widely. Join with us to protect our community from research that ignores the biological realities of ME/CFS and promotes a potentially harmful therapy. You can find more information at: www.stopGET.org Are you a UK citizen or resident? If so, sign this UK parliament petition: https://petition.parliament.uk/petitions/166601. We aim for it to reach 10,000 signatures — fast — which guarantees a government response.
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  • Save the Gottfries Clinic
    The Gottfries clinic is the leading ME/CFS and Fibromyalgia clinic in Sweden. It both treats patients and conducts biomedical research. Politicians in Gothenburg, Sweden have now decided not to renew the contract with the clinic when it expires on 30 November 2016. Instead, it plans to announce a new procurement for the treatment of so-called MUS (medically unexplained symptoms). Their view is that ME/CFS and Fibromyalgia are not separate diagnoses but belongs to a group of illnesses called functional somatic syndromes, i.e., psychosomatic disorders. The premise is that these should be treated only with various forms of psychotherapy. The patients will have no biomedical treatment. This is a scandalous decision which is based on an ignorance that is surprising. The decision was made by a committee that completely ignored the last ten years of research. There is now good evidence that both ME/CFS and Fibromyalgia are chronic, somatic diseases that have a devastating effect on patients' lives. To refuse to treat these patients medically is the equivalent of refusing to give Alzheimer patients other treatments than CBT, or to remove all MS patients' medications and just give them antidepressants. It is not compatible with Swedish law which states that everyone should be provided good health on equal terms.
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  • A Spanish petition that needs support from #pwME
    " On January 18, 2019, an " Update Guide in the Evaluation of Fibromyalgia, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Electrosensitivity and Somatoform Disorders was published on the Social Security website . 2nd Edition ". It contains a definition of each pathology, form of diagnosis, evolution and treatment, as well as indications about the periods of disability, temporary and permanent, and the evaluation of it. For this reason, it will not only reach the evaluators and inspectors of the National Institute of Social Security (Ministry of Labor), it will also be distributed to all primary care doctors in the national territory, with the aim of determining temporary work disabilities. It is important to note that such a wide distribution of the Guide, and given that there is no official document that organically defines and specifies each pathology by either the Ministry of Health or the Health Departments of the different Autonomous Communities, it gives it an importance and fundamental importance for patients. In this DOCUMENT we gather the outdated or absent aspects of rigor of this guide. We summarize the most important points: 1. The inclusion of Somatoform Disorder among the diseases that are really the object of the Guide has no medical or scientific justification. This disorder acts in fact as a filter, veiled or explicitly denying the reality of these diseases as organic pathologies and their own entities, ignoring current scientific evidence. 2. For the preparation and revision of this Guide, the medical specialists who study and / or treat them have not been taken into account. 3. Codes attributed to other conditions have been used, which in some cases do not coincide with the diagnostic criteria included in the guide. 4. Some of the approaches and treatment recommendations included in the guide pose a risk to the health and integrity of patients. 5. Useful tests for the evaluation of diseases are rejected or ignored. 6. In general, its content does not reflect the evidences, scientific updates or clinical advances related to these diseases. In short, it is a guide that worsens the social and work situation of thousands of patients, violating their fundamental rights in health and healthcare, as well as access to benefits and social services. In addition, its application can cause serious damage to health. PATIENT ASSOCIATIONS WE ASK FOR THE WITHDRAWAL OF THIS GUIDE, as well as its non-distribution, REVISION AND RE-PAIL in the light of updated data that have not been taken into account and with expert advisors . This direct petition has been dismissed by the INSS. That is why today we turn to the citizens to request support for our petition. WE ARE SEEKING TO IMPROVE THE CONDITIONS OF HEALTH AND SOCIAL CARE TO THESE PATHOLOGIES. SUPPORT US, SIGN THIS APPLICATION AND DISSEMINATE." * Original text written by CONFESQ ( National Coalition of Fibromyalgia Entities, SFC, SQM and EHS) in the signature petition change.org: https://www.change.org/p/instituto-nacional-de-la-seguridad-social-ministerio-de-trabajo-retiren-la-gu%C3%ADa-del-inss-para-fibromialgia-sfcem-sqm-y-ehs-1bdf1ba3-f125-4612-afd6-8d959f25656a
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