• 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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  • 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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  • 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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  • 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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  • 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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