• 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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  • 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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  • Fund research into CFS/ME and educate health professionals.
    So that CFS/ME sufferers can finally be taken seriously and understood. To stop people taking their own lives. To help people with CFS/ME get well again or at least be able to receive the medical/financial help they need to avoid symptoms worsening..
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  • Reinstate CDC Research Funding for ME/CFS
    From Whitney Dafoe: "I have been struggling with health problems for the past 8 years, since I was 21. Every time I traveled my health seemed to plummet. But I have always been inspired and dedicated and never thought I'd wind up where I am now. So I kept going, kept pushing myself to do everything I wanted to do. My trip to India was the last straw it seems. For the past 4 years I have been really sick. I started a wedding photography business when I realized I could no longer hold a full time job, thinking that it was a blessing in disguise because once I got my health back I would be making money doing something I loved. After a year things were looking really good business wise, but it took me longer and longer to recover from the intense physical requirements of shooting a wedding. When I couldn't recover in a week in order to shoot the next wedding, I decided I had to give it up which was pretty heartbreaking because of what it represented. That was in 2010. For the last 2 years I have been bedridden much of the time, my health and mobility slowly decreasing. I'm now forced to rest in bed most of the day, saving up energy for little bits of projects like writing this, or working on some photographs for a half hour or an hour on a good day. About 2 years ago, after seeing countless doctors and specialists in every area of medicine I could find, having blood drawn over and over again and literally hundreds of tests done, I was finally diagnosed with Chronic Fatigue Syndrome by Dr. Andy Kogelnik at the Open Medicine Institute in Mtn View CA. I have been working with him ever since. But there is no cure. I will be taking some experimental drugs that have shown promise in limited trials. Let's hope for the best. The Symptoms of Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis (ME) as it's called in Europe, vary from patient to patient. The most fundamental symptom is debilitating fatigue. But fatigue is much too mild a word. I like to compare the state I'm in now to staying up for two nights in a row while fasting, then getting drunk. The state you would be in on the third day- hung over, not having slept or eaten in 3 days- is close, but still better than many CFS patients feel every day. "Total body shut down" would be a better phrase because you are at a point where your body physically does not have the energy to keep going. Patients with CFS also experience something that is often called Post Exertional Malaise.. Most people, including people afflicted with many other illnesses improve with exercise. Even after an intense workout or a long day of work, they recover after a night's rest. Patients with CFS experience a severe worsening of physical symptoms during or after exercise. We tend to have a certain amount of energy reserves (far less than healthy people) often called an "energy envelope". If we push ourselves to keep going past this, the symptoms worsen significantly and it often takes days or weeks to return to where we were before. Some patients are permanently worsened. No amount of willpower, happiness or excitement changes this. I can be out of my mind with bliss and still run out of energy to work on something. There are some new studies examining this unique symptom and they are finding that patients with CFS react differently to exercise. We will see much more on this in the near future and hopefully see a diagnostic test emerge from this research soon. One of the terrible things about CFS is that because of the lack of understanding in the general public, most patients are constantly told to "suck it up", or that "exercise makes other people feel better" etc. Which creates a lot of guilt and shame for patients who already desperately want to do more but physically cannot. Not to mention not feeling understood. And it also pushes people to do more than they should, the results of which can be catastrophic. This is why we need more awareness. I spent the first years of this illness pushing myself. I thought it would eventual go away, and I tried to just keep going and do as much as I could. I didn't want to surrender to it, or let it shape my life. If I had known more about CFS and the consequences of over exertion, I may not be nearly as sick as I am today. Though who knows, I probably would have been optimistic and tired to do everything I did anyways. I am now bedridden most of the time. I can't walk much because of circulation and muscle problems in my legs and arms. I don't even have the energy to sustain computer work or conversation with people for more than short amounts of time. But some people are much worse than I am...." Read more: http://www.whitneydafoe.com/news/index.html
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  • Tell Congress to Support Funding Equality for ME: Arkansas
    In order to fuel the research necessary to uncover causes and find effective treatments, we need Congress to fund ME/CFS at a level equivalent to that of other similarly disabling neurological diseases. SHARE YOUR STORY We want to present our elected leaders with real stories from the lives of their constituents who have been affected by ME. When you sign, please consider leaving a comment, story, or testimonial under �reasons for signing.� NOT A VOTER IN THIS STATE? Search the map to find your local petition: http://my.meaction.net/efforts/tell-congress-to-support-funding-equality-for-me-cfs/near/new If you are not a US voter, you can sign the global solidarity petition: http://my.meaction.net/petitions/us-congress-me-patients-around-the-world-care-about-funding-equality
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