• 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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  • 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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  • The #MillionsMissing Global Petition for ME Equality
    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.
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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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  • NIH: Put ME/CFS patients at heart of research design process
    The patient community has several concerns about the trial: • The proposed Lead Clinical Investigator has referred to “somatoform illnesses, such as... chronic fatigue syndrome” [1] and several other researchers on the project have a psychogenic focus to their work. • The inclusion of a control group (now removed) with what the NIH considers to be a psychogenic disorder (functional movement syndrome) appears to suggest a psychogenic influence on the research approach. • Another proposed control group for the trial consists of post-Lyme patients, but the controversy over the accuracy of diagnostic tests for Lyme may make it an unsuitable control. • The study appears small, with only 40 ME/CFS patients, raising the question of whether it is big enough to detect useful effects, especially in the presence of subgroups. • A preliminary study design has been announced before any consultation with patients, and communication has been piecemeal. These factors — especially the psychogenic elements — are contributing to a collapse in confidence in the study among patients and are likely to seriously hinder the recruitment of patients to the study. We believe these concerns could have been addressed and avoided and the trial design improved upon if patient input and experience had been integrated from the beginning. In future, we want to be involved in helping to design ME/CFS research from the ground up. Patient participation matters. Our community is wary of government institutions, and for good reason. We have had a long history not only of neglect but on occasion of active obstruction. However, we believe that this distrust will be overcome quickly if the NIH demonstrates clear communication and decisive action. Patients are experts in their lived, direct experience of the disease and know best what aspects of it are important. Many have also studied the science. Some even had careers in science before they were struck down. All can contribute: all want to contribute. Without our input, the study will be the lesser; and without our input, patients will not trust it. Patients are desperate for good research and we want your — our — study to be excellent. We understand [2] that a patient advisory committee will be set up and we urge you to convene it as soon as possible. Let us work with you, right from the beginning, and build together a study that both researchers and patients can celebrate without reservation. READ MORE: Design of the NIH post-infectious ME/CFS study http://www.meaction.net/design-of-the-nih-post-infectious-mecfs-study/ Patients’ concerns about the study design http://www.meaction.net/patients-concerns-about-the-study-design/ Simon McGrath article explaining the science in the study http://www.meaction.net/2016/03/03/extraordinary-nih-mecfs-study-may-be-most-comprehensive-and-in-depth-ever/ REFERENCES: [1] http://www.ncbi.nlm.nih.gov/pubmed/25573802 [2]http://www.meaction.net/2016/02/17/qa-about-patient-involvement-act-up-and-rfas-with-dr-nath/
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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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  • Misleading PACE claims should be retracted
    The UK’s £5 million PACE trial has been hugely influential in bolstering the view that CFS (chronic fatigue syndrome) patients can recover if they gradually increase their activity, despite widespread reports of harm [5]. This view informs how patients around the world are treated in the media, in medical practice and by society. It is crucial that misleading claims of recovery do not stand.

 "All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.” – Emeritus Professor Jonathan Edwards of University College London 

Claims have been made in The Lancet and Psychological Medicine that a substantial proportion of CFS patients in the PACE trial recovered after a course of cognitive behavioural therapy (CBT) or graded exercise therapy (GET). However, the claims are based on criteria that were revised after the study was already underway. These new criteria included “normal ranges” for fatigue and physical function that are so broad that patients could at the end of the trial have physical function similar to someone with congestive heart failure — and yet be classed as “recovered”. 

Being as disabled as patients with congestive heart failure [6] simply isn’t good enough to count as recovery of physical function for patients with chronic fatigue syndrome. READ MORE: http://www.meaction.net/background-to-the-petition/ [1] http://bit.ly/1Rexu6L [2] http://bit.ly/1PUEyHm [3] http://1.usa.gov/1iioqBz   [4] http://bit.ly/1PRcpBK [5] http://bit.ly/1Mtu8yM [6] http://1.usa.gov/1iioXDC Editor's note: We use here the term "Chronic Fatigue Syndrome" (CFS) in line with the PACE trial authors' terminology and use of the Oxford Criteria.
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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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  • NIH, please create a new RFA for ME/CFS
    read the letter: http://www.meaction.net/wp-content/uploads/2015/05/ScientistLetterMEResearch.pdf
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  • Need NIH funding to cure M.E. for 1-2 million Americans
    The lack of biomarkers for Myalgic Encephalomyelitis makes this disease hard to track by CDC, or find cures by NIH. R&D funding is needed to cure ME/CFS, saving $20Billion per year to US, and getting these patients back into schools & workforce. Just like AIDS 35 years ago, we need your help to now solve the last major chronic disease that we still know almost nothing about. For more info, see also www.END-MECFS.org
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  • Fund research into CFS/ME and educate health professionals.
    So that CFS/ME sufferers can finally be taken seriously and understood. To stop so many people with this illness taking their own lives. To get the medical and financial help for people with CFS/ME
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