• Per Fink Should Not Spread Lies about ME at Columbia University!
    Per Fink's approach has been responsible for children being removed from their homes because he believes ME is psychosomatic. Per Fink’s clinic claims to treat ME but no patient has ever received an ME diagnosis there. So far, 55 patient complaints about his practices at the clinic have been sent to the Board of Patient Safety in Denmark. Per Fink WRONGLY claims: - ME is a form of BDS because the symptoms of ME fit into his overly-broad BDS concept. - He can cure ME patients with Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) – he uses the flawed PACE trial as evidence. - His website claims that no patients have been harmed by his treatments. - ME is caused by incorrect illness beliefs, deconditioning and stress. There is no scientific evidence for any of this. And yet, in less than a month, on October 20, Per Fink will be speaking at Columbia University. The Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health received part of a $9.6 million dollar multi-center grant over five years to study the biology of ME. How can a university that accepts grants to study ME also host a speaker that propagates the idea that ME is psychosomatic? Please sign this petition to demand that the conference director, Dr. Alla Landa, uninvite Per Fink from the Psychosomatic Conference at Columbia University. UPDATE (10/08/18): We've updated the language in the above paragraph about the Center for Infection and Immunity (CII) to clarify that CII is not hosting the event nor do they support it. They study the biomedical reality of ME. This petition is calling on the University to disinvite Per Fink, not CII. Also CII only received part of the $9.6M multi-center grant (since they are one of several centers funded by this grant).
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  • 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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  • Call for HHS to Investigate PACE
    The multiple and fundamental flaws of the PACE trial would be problematic in any field. However, the UK’s £5 million PACE trial has been hugely influential in bolstering the incorrect view that the debility of ME/CFS is the result of false cognitions, a “fear of activity,” and subsequent deconditioning. This view informs how patients around the world are treated in the media, by society, and especially in medical practice. Numerous U.S. clinical guidelines and medical education material, including CDC’s, reference PACE in support of their recommendations for CBT and GET. Basing treatment recommendations on such a questionable study creates a significant risk of harm for patients, particularly when the study could include patients with other conditions. This potentially affects patients globally because the AHRQ Evidence Review could be referenced in future journal articles and used to justify recommendations for CBT and GET in the clinical guidelines of any country. READ MORE: [1] David Tuller. “TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study.” Virology Blog. October 21-23, 2015. Part 1 & 2: http://www.virology.ws/2015/10/21/trial-by-error-i/ Part 3: http://www.virology.ws/2015/10/22/trial-by-error-ii/ Part 4: http://www.virology.ws/2015/10/23/trial-by-error-iii/ [2] Smith MB, Haney E, McDonagh M, Pappas M, Daeges M, Wasson N, et al. “Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop.” Ann Intern Med. 2015; 162: 841-850. http://dx.doi.org/10.7326/M15-0114 [3] U.S. Centers for Disease Control and Prevention. “Diagnosis and Management of Chronic Fatigue Syndrome” CDC Chronic Fatigue Syndrome. June 27, 2012. http://www.cdc.gov/cfs/education/diagnosis/index.html [4] The ME Association. “ME/CFS Illness Management Survey Results ‘No decisions about me without me’.” May 2015. Last accessed October 26, 2015. http://www.meassociation.org.uk/2015/05/23959/ For more information see: Julie Rehmeyer. “Hope for Chronic Fatigue Syndrome.” Slate Magazine. http://bit.ly/SLATE_PACE
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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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