Biomedical Research in ME/CFS *Research overviews The Latest Research on CFS (Lecture) Massachusetts CFIDS/ME & FM Association Anthony L. Komaroff, MD 2013 Link to video Action for M.E. AGM 2013 Action for ME Stephen Holgate 2013 Link to video One Person's Highlights of the Biological Research Presentations IACFS/ME Conference Anthony L. Komaroff, M.D. 2014 Link to video The Biology of Chronic Fatigue Syndrome Medicine Grand Rounds - Stanford School of Medicine Anthony L. Komaroff, M.D. 2014 Link to video ME & possible treatments Wetenschap voor Patienten - ME/cvs Vereniging Dr. Charles Shepherd 2014 Link to video Promising discoveries and research Wetenschap voor Patienten - ME/cvs Vereniging Dr. Charles Shepherd 2014 Link to video State of affairs regarding ME Wetenschap voor Patienten - ME/cvs Vereniging Dr. Charles Shepherd 2014 Link to video ME and the future Wetenschap voor Patienten - ME/cvs Vereniging Dr. Julia Newton 2014 Link to video 2014 ME/CFS Research Review Solve ME/CFS Suzanne D Vernon 2014 Link to video New Developments in ME/CFS Research Solve ME/CFS Dr. Alan R. Light 2015 Dr. Alan R. Light, Research Professor of Anesthesiology and Neurobiology and Anatomy at the University of Utah. Link to video Pre-Conference Dinner Keynote Speech Kjersti Krisner 11th International ME Conference 2016 - IIMEC11 Kjersti Krisner 2016 Link to video *Specific Research programs NIH Webinar with Avindra Nath, M.D. Solve ME/CFS Dr. Avindra Nath 2016 Link to video Cornell university Webinar with Dr. Maureen Hanson Solve ME/CFS Maureen Hanson 2016 Maureen Hanson, PhD, professor of molecular biology and genetics at Cornell University. Link to video Solve ME/CFS Progress and Challenges in ME/CFS with Zaher Nahle, PhD, MPA Solve ME/CFS Zaher Nahle 2016 Link to video Standford University ME/CFS Symposium at Stanford 2017 Link to video An Update on ME/CFS Research with Dr. Ronald W. Davis Open Medicine Foundation - OMF Ronald W. Davis 2017 Link to video UK ME/CFS Biobank London School of Hygiene and Tropical Medicine Dr Charles Shepherd 2015 Link to video *International research What do we need to do – research in ME/CFS Invest in ME Prof Julia Newton, Karl Morten 2017 Prof Julia Newton of Newcastle University and Karl Morten of Oxford University talk about forging international collaborations in the field of M.E./CFS research. Link to video
Biomedical Research in ME/CFS *Metabolism ME, exercise and the mitochondria Wetenschap voor Patienten - ME/cvs Vereniging Dr. Charles Shepherd 2014 Link to video Research into Mitochondria & M.E. Dr Karl Morten 2016 Link to video S4ME thread Mitochondria not Hypochondria CCDP 2016 Link to video Abnormal Exercise Response and Metabolism in ME/CFS RME Konferens Malmö Pr. Maureen Hanson, Cornell University, New York 2017 Link to video Professor Warren Tate's Update on His Research into ME/CFS ANZMES Annual General Meeting Professor Warren Tate 2017 Link to video S4ME thread Metabolites Webinar with Christopher Armstrong Solve ME/CFS 2016 Link to video *PEM Top 10 Things You Should Know About Post-Exertional Relapse Solve ME/CFS 2012 During a webinar held July 19, 2012, researchers from the Pacific Fatigue Lab at the University of the Pacific shared their insights into the characteristics of PEM and addressed the 10 most-asked questions about it based on hundreds of questions submitted in advance. Link to video Deciphering Post Exertional Malaise Dane B. Cook Solve ME/CFS 2014 Dane B. Cook, Ph.D. is assistant professor of Kinesiology at the University of Wisconsin, Madison. Cook describes the system biology approach his team is taking to provide a clear picture as to what causes post-exertional malaise. Link to video Mark VanNess 'Exercise and ME/CFS' at Bristol Watershed 2014 Prof Mark VanNess from the Workwell Foundation USA presents evidence of the damaging consequences of aerobic exercise programmes (such as GET) for people with ME, comments on observations made by people in the 'Voices from the Shadows' film shown, and explains a more helpful approach to activity and exercise management. Filmed & edited by J Biggs. Link to video Post-Exertional Malaise: History, Characteristics, Evidence Dr. Lily Chu Solve ME/CFS 2015 Dr. Chu is Co-Vice President of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and a Stanford University ME/CFS Initiative Community Advisory Board Member Link to video Inducing Post-Exertional Malaise in ME/CFS: A Look at the Research Evidence Dr. Peter Rowe, Johns Hopkins Children’s Center Solve ME/CFS 2015 Link to video Post-Exertion Malaise: The Intersection of Biology and Behavior Solve ME/CFS Dr. Dane B. Cook 2015 Much of Dr. Cook’s research uses functional magnetic resonance imaging (fMRI), in conjunction with biological and behavioral outcomes, to understand central nervous system mechanisms of pain and fatigue in patients with fibromyalgia and ME/CFS and veterans with Gulf War illness. These studies combine exercise science and brain imaging methods to better understand these diseases. More recently, Dr. Cook’s research has begun to incorporate additional biological systems, such as the immune, autonomic and gut microbiome to better understand how distinct, yet related, physiological responses interact to maintain illness. Link to video PEM MEFM Society of BC May Awareness Event Stacie Stevens 2015 Link to video Exercise Clinical exercise testing in CFS/ME research and treatment RME Stockolm Professor Christopher R. Snell, Pacific Fatigue Laboratory, Kalifornien, USA 2012 Link to video Exercise and ME/CFS Bristol Watershed Dr Nigel Speight 2014 Link to video Expanding Physical Capability in ME/CFS MEFM Society of BC Dr. Mark Van Ness 2016 Part 1 Part 2 *Immunology Stanford's Dr. Jose Montoya on Chronic Fatigue Syndrome Stanford Health Care Dr. Jose Montoya 2011 This talk features discussion about CFS and current research regarding diagnosis and treatment, and the possible CFS-infection connection. Link to video Investigator Report: Decoding the Human Immune Response Solve ME/CFS Derya Unutmaz 2014 Derya Unutmaz, MD, is Professor of Microbiology, Pathology and Medicine at NYU Langone Medical Center. Unutmaz is using samples from the SolveCFS BioBank to understand the “Good, Bad and Ugly” aspects of the immune response in ME/CFS. Unutmaz hypothesizes that a disproportionate immune response leads to damage in ME/CFS. He will describe what the immune signature of ME/CFS looks like compared to a healthy immune response. Link to video Olav Mella speaks about the Rituximab study and ME/CFS future Olav Mella 2014 Olav Mella from Haukeland University Hospital in Norway speaks about the upcoming Rituximab study at the premiere for the film Perversely Dark. Link to video The RituxME and CycloME studies – Ongoing Clinical Research in the ME/CFS Research Group RME Sverige Öystein Fluge 2016 Link to video ME/CFS and the immune system. Where are we now? RME Konferens Malmö Geraldine (Jo) Cambridge, PhD, Dep.Medicine, University College, London 2017 Link to video CMRC Conference 2017 day 2 - Prof Jose Montoya ActionFor M.E. Prof Jose Montoya 2017 Prof Jose Montoya of Stanford University talks about his latest research involving Cytokines in the blood of people with M.E./CFS. Link to video Discovery Forum 2017: An Interview with Dr. Ian Lipkin Solve ME/CFS Dr. Ian Lipkin 2017 In this exclusive interview, Dr. Zaher Nahle discusses ME/CFS science and policy with Dr. Ian Lipkin, Director of the Center for Infection & Immunity at Columbia University and the director of the new NIH-funded Center for Solutions for ME/CFS. Link to video From Theater to Science: A ’Medical Detective’ Describes His Journey White House Chronicle Llewellyn King Dr. Ian Lipkin 2017 Link to video S4ME thread *Neurology Webinar with Jarred Younger, Ph.D. Solve ME/CFS Jarred Younger 2016 Jarred Younger, Ph.D., is Associate Professor in the Departments of Psychology, Anesthesiology and Rheumatology in the University of Alabama at Birmingham. Dr. Younger obtained his Ph.D. in Experimental Psychophysiology at the University of Tennessee, Knoxville in 2003 and completed postdoctoral pain research fellowships at Arizona State University and Stanford University before accepting an Assistant Professor position at Stanford University in Anesthesiology in 2010. Dr. Younger moved to the University of Alabama at Birmingham in 2014 to establish the Neuroinflammation, Pain and Fatigue Laboratory, where he oversees the development of new diagnostic tests and treatments for chronic pain and fatigue disorders. Link to video ME/CFS Biomarkers in the Cerebrospinal Fluid Professor Jonas Bergquist, Department of Chemistry, Uppsala University, Sweden RME Sverige 2017 Link to video Neuroradiology studies of ME/CFS Doctor Per Julin, MD, ME/CFS Clinic, Stora Sköndal Neuro Rehabilitation Center, Stockholm, Sweden RME Sverige 2017 Link to video *Autonomic dysfunction Guidance for GPs and other health professionals on autonomic dysfunction fatigue in ME-CFS Professor Julia Newton (Newcastle Hospitals NHS Trust, Dean for Clinical Medicine Newcastle University) on autonomic dysfunction and fatigue in ME-CFS. Action for ME 2014 Link to video Managing Orthostatic Intolerance Peter Rowe Solve ME/CFS 2010 In this Sept. 1, 2010 webinar, Peter Rowe, MD, of Johns Hopkins University School of Medicine describes orthostatic intolerance (OI) and approaches to its treatment in chronic fatigue syndrome (CFS). He explains the different forms of OI, including neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS) and other names used to describe these conditions. Dr. Rowe covers overlapping and co-existing conditions including joint hypermobility, Ehlers Danlos Syndrome (EDS), migraine, allergy, pelvic congestion syndrome. He reviews medications used to treat OI as well as postural and dietary approaches to comprehensive care. Link to video CMRC Conference 2017 day 1 - Dr Peter Rowe Action For M.E. Dr Peter Rowe 2017 Dr Peter Rowe of the John Hopkins Children's Centre for CFS in the USA talks about Orthostatic Intolerance and the lessons that have been learned about it over the last two decades. Link to video *Neuromuscular dysfunction Neuromuscular Strain in ME/CFS Peter Rowe Solve ME/CFS 2014 Peter Rowe, MD, describes some novel observations about restrictions in range of motion in the limbs and spine in those with ME/CFS. Many affected individuals have restricted movements and increased mechanical tension in nerves. Applying a further mechanical strain to the nervous system can provoke increased symptoms in some patients. These concepts are starting to help explain the pathogenesis of some symptoms and neurological abnormalities in the illness—not only how they might arise but also how we might treat them more effectively. Link to video The metabolism and the muscles Wetenschap voor Patienten - ME/cvs Vereniging Dr. Julia Newton 2014 Link to video *Microbiome The Altered Gut Microbiome in ME/CFS Professor Jonas Blomberg, Uppsala Universitet 2017 Link to video *Genes Investigator Report: Epigenetics of ME/CFS Solve ME/CFS Patrick O. McGowan 2014 Patrick O. McGowan used blood samples from the SolveCFS BioBank to identify the chemical modifications (e.g., methylation) to the DNA that is different in ME/CFS patients compared to healthy people. This type of research will help explain the immune dysfunction of ME/CFS. Link to video Novel Gene Variants in ME/CFS and Fibromyalgia Bateman Horne Center Alan Light 2017 Link to video
*Sleep ME and sleep disorders Wetenschap voor Patienten - ME/cvs Vereniging Kenny de Meirleir 2013 Link to video Can ME CFS and Fibromyalgia Research Help You Sleep? Dr. Lucinda Bateman Solve ME/CFS 2014 Dr. Lucinda Bateman tells us about the body systems that regulate and affect sleep and how these systems are affected in patients with ME/CFS and Fibromyalgia. Dr. Bateman will discuss sleep research can translate into practical solutions and treatment in ME/CFS and FM. Link to video ME and sleep Wetenschap voor Patienten - ME/cvs Vereniging Dr. Julia Newton 2014 Link to video Sleep and ME/CFS Suzanne Vernon, PhD Bateman Horne Center 2015 Link to video *Cognition Cognition & CFS: What Do We Know? Dr. Gudrun Lange and Dr. Suzanne Vernon Solve ME/CFS 2012 Impaired cognition in CFS is one of the most disabling and frustrating symptoms patients experience. Deficits in short-term memory, information processing and processing speed have been documented by several research groups. How closely does the medical literature reflect patients' experiences and how can cognitive testing help support self-reported measures? Link to video ME/cfs and neuropsychological symptoms Wetenschap voor Patienten - ME/cvs Vereniging Dr. M. Vollema, clinical neuropsychologist 2013 Link to video Neurocognitive problems in ME Wetenschap voor Patienten - ME/cvs Vereniging Dr. Julia Newton 2014 Link to video ME versus psychiatric disorders Wetenschap voor Patienten - ME/cvs Vereniging Prof. Leonard Jason 2014 Link to video Cognitive challenges for children/adolescents with ME Norges Myalgisk Encefalopati Forening Professor Kristian Sommerfelt Norwegian with English Subtitles 2017 Link to video *Pain ME and pain Wetenschap voor Patienten - ME/cvs Vereniging Kenny de Meirleir 2013 Link to video *Cardiology Wetenschap voor Patienten - ME/cvs Vereniging With Prof. Dr. F.C. Visser, cardiologist 2013 ME/cfs and the heart Link to video ME/cfs and palpitations Link to video ME/cfs and cardiac arrhythmias Link to video ME/cfs and POTS (Postural Orthostatic Tachycardia Syndrome) Link to video ME/cfs and the blood flow in the brain Link to video ME/cfs and orthostatic intolerance Link to video * Children and adolescents Wetenschap voor Patienten - ME/cvs Vereniging With Dr. Nigel Speight In this web seminar the English paediatrician Dr. Nigel Speight is being interviewed by Rob Wijbenga, chairman of the Dutch ME/cvs Association and coordinator of the project 'Wetenschap voor Patiënten' or in English 'Science to Patients'. Dr. Nigel Speight has been involved in 30 child protection cases where children with ME have been threatened by removal from their families by social services. In this interview he talks about this cases and the situation with regard to children with ME in Great Brittain. Interview with Dr. Nigel Speight (paediatrician) Link to video What is ME and what is CFS? Link to video Diagnostic tools for ME Link to video ME/cfs and the course of the disease Link to video ME & children, part 1 Link to video ME & children, part 2 Link to video Future and hope Link to video A Clinical Approach to ME/CFS in Adolescent and Young Adults: A Practical Primer Solve ME/CFS Peter Rowe 2017 Link to video *Ageing Ageing and ME Wetenschap voor Patienten - ME/cvs Vereniging Dr. Julia Newton 2014 Link to video *Diagnosis Defining CFS: Diagnostic Criteria and Case Definitions Dr. Leonard A. Jason Solve CFS/ME 2010 In this presentation, Dr. Leonard A. Jason of DePaul University explores current CFS and ME/CFS case definitions and whether they adequately identify patients who have this illness. He offers the argument that better case definitions might help identify more homogenous patient groups, which could facilitate the identification of biological markers for this illness. Dr. Jason has been engaged in several of the efforts to craft meaningful definitions for CFS. He will discuss the various CFS case definitions, how they impact research and care, and how the definitions might be improved to better serve researchers, clinicians, and patients. Link to video What is the difference between ME and CFS Wetenschap voor Patienten - ME/cvs Vereniging Dr. Charles Shepherd 2014 Link to video How is ME diagnosed? Wetenschap voor Patienten - ME/cvs Vereniging Dr. Charles Shepherd 2014 Link to video ME and its triggers Wetenschap voor Patienten - ME/cvs Vereniging Dr. Charles Shepherd 2014 Link to video Criteria and diagnosis, part 1 Wetenschap voor Patienten - ME/cvs Vereniging Prof. Leonard Jason 2014 Link to video Criteria and diagnosis, part 2 Wetenschap voor Patienten - ME/cvs Vereniging Prof. Leonard Jason 2014 Link to video Population and social impact Wetenschap voor Patienten - ME/cvs Vereniging Prof. Leonard Jason 2014 Link to video P2P 2014 Meeting on ME and CFS Leonard Jason's presentation 2014 Link to video Dr Ellen Wright Clayton at the SMCI IOM briefing Solve ME/CFS Ellen Clayton 2015 On March 25,2015, the Solve ME/CFS Initiative hosted a briefing in Washington, D.C., on the Institute of Medicine’s report on myalgic encephalomyelitis/Chronic Fatigue Syndrome. Link to video Will SEID Diagnostic Criteria Improve Diagnosis and Treatment? Solve ME/CFS Dr Lucinda Bateman 2015 Link to video Myths about ME Presentation to the Ethical Humanist Society of Chicago Leonard Jason 2017 Link to video S4ME thread Sub Groups CFS Subgroups Younger Lab Jarred Younger 2017 Here are some new results from the daily blood draw Chronic Fatigue Syndrome study that suggests there are important subgroups. Link to video
Documentaries/TV report *Documentaries I remember ME Kim Snyder 2000 Link to information Link to documentary Voices from the shadows Natalie Boulton and Josh Biggs 2012 “Voices from the Shadows” shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. It was filmed and edited between 2009 and 2011 by the brother and mother of an ME patient in the UK. The film shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the reality of this physical illness and the severe relapse or exacerbation of symptoms that can be caused by increased physical or mental activity, over exposure to stimuli and by further infections. Link to trailer Link to film website Forgotten Plague Ryan Prior 2016 Ryan Prior’s life imploded October 22, 2006 when he was struck down by a disease that dozens of doctors were powerless to diagnose, let alone treat. Against great odds, he becomes a reporter and ventures to tell the story of his suffering and improbable recovery. He is shocked that millions globally remain sidelined by the same disease, many bedridden for decades. Forgotten Plague is a journey into the hidden world of myalgic encephalomyelitis (chronic fatigue syndrome). It is a chilling tale of our medical system’s failures in addressing many chronic, complex diseases. Yet it is also a riveting story of science’s remarkable ability to transform medicine and improve human life itself. Link to film website Unrest Jennifer Brea 2017 Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.” In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine. Unrest world-premiered January in the documentary competition at the 2017 Sundance Film Festival, where it won a Special Jury Prize for editing. It has since screened at SxSW, CPHOX, HotDocs, River Run (Audience Award for Best Documentary Feature), the Nashville Film Festival (Grand Jury Award for Best Documentary Feature), among Sheffield Doc/Fest (Illuminate Award). It also has a companion VR piece which premiered at Tribeca and won the Jury Award for best VR at Sheffield/DocFest. Link to watch movie Link to trailer TV shows and series The Golden girls *Living with ME /Patient's perspective Stuart Murdoch of Belle and Sebastian ME/CFS Interview in L.A. Solve ME/CFS Stuart Murdoch 2015 Stuart Murdoch, lead singer of the indie band Belle and Sebastian, talks to the Solve ME/CFS Initiative about his experience with the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Link to video QUB ePatient Conference Sally Burch 2015 Link to video What happens when you have a disease doctors can't diagnose TedTalk Jennifer Brea 2017 Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat. Link to video
*Advocacy 6 Ways to Maximize Your Congressional Advocacy Impact Solve ME/CFS 2017 Join Advocacy and Engagement Manager Emily Taylor to learn 6 ways to maximize your advocacy impact and hear about SMCI’s 2017 congressional advocacy strategy. Link to video ME/CFS Advocacy Week: Local Action Training Solve ME/CFS Emily Taylor, Gail Cooper 2017 Solve ME/CFS Initiative Director of Advocacy and Public Relations, Emily Taylor, and #MEAction Congressional Chair, Gail Cooper, teach you how to be a part of your local advocacy team for ME/CFS Advocacy Week. Link to video ME/CFS Advocacy Week: District Action Training Solve ME/CFS Emily Taylor, Gail Cooper 2017 Link to video Welcome Washington! How to conduct your D.C. Meeting Solve ME/CFS Emily Taylor, Gail Cooper 2017 Link to video *ME (lack of) funding Money and ME MEAnalysis 2013 Link to video NIHspending2017 MEAnalysis 2016 Link to video *Politics California Passes a Resolution for ME/CFS Solve ME/CFS 2017 We did it! Watch California become the 6th state to pass a resolution for ME/CFS with unanimous support! Link to video Senator Markey Stands Up for ME/CFS disease! Solve ME/CFS, #MEAction 2017 U.S. Senator Ed Markey (D-MA) speaks about the urgent need to support ME/CFS and increase federal funding at a congressional briefing organized by the Solve ME/CFS Initiative and #MEAction Link to video *ME history CFS and the CDC's Failure to Respond Primetime Live 1996 This is a Primetime Live news piece on chronic fatigue syndrome (CFS) from 1996. It covers the sudden U.S. outbreaks in the 1980s and the CDC's lack of response. Discussion includes Dr. Paul Cheney, Dr. Daniel Peterson, Dr. David Bell, Elaine DeFreitas, Hillary Johnson, and Osler's web. Link to video CFS / CVS - Dr. Byron Hyde Wetenschap voor Patienten - ME/cvs Vereniging 2016 Dr Byron Hyde talks about 1930’s epidemics. Link to video
Biopsychosocial view of ME and CFS *Royal Society of Medicine “Chronic Fatigue Syndrome” Conference - 2008 CBT and GET - Professor Rona Moss-Morris Royal Society of Medicine “Chronic Fatigue Syndrome” Conference Professor Rona Moss-Morris 2008 Link to video Epidemiology Royal Society of Medicine “Chronic Fatigue Syndrome” Conference Professor Simon Wessely, King's College London 2008 Link to vide What is Chronic Fatigue Syndrome? And What is ME? What is CFS? Royal Society of Medicine “Chronic Fatigue Syndrome” Conference Peter D White 2008 Link to video Comments on lecture by Charles Shepherd S4ME thread Assessment: psychiatrists approach Royal Society of Medicine “Chronic Fatigue Syndrome” Conference Professor Matthew Hotopf Institute of Psychiatry, London 2008 Link to video Pathophysiology Royal Society of Medicine “Chronic Fatigue Syndrome” Conference Dr Anthony Cleare Institue of Psychiatry, London 2008 Link to video What drugs can I use? Royal Society of Medicine “Chronic Fatigue Syndrome” Conference Dr Alastair Miller Royal, Liverpool University Hospital 2008 Link to video Management: NICE Guidelines Royal Society of Medicine “Chronic Fatigue Syndrome” Conference Professor Richard Baker, Leicester University 2008 Link to video Me Association Statement about RSM 2008 MEAction Concerns about RSM 2008 *Lectures Psychological issues in the management of Chronic Fatigue Syndrome and other long term conditions Alison Wearden Date unknown Link to video 'Understanding and managing chronic fatigue syndrome in an interpersonal context' Professor Alison Wearden 2014 'Understanding and managing chronic fatigue syndrome in an interpersonal context', Professor Alison Wearden speaking at 2014 Division of Health Psychology annual conference in York. Link to video Severe M.E. Symposium Action for M.E. Dr Clare McDermott 2014 Link to video ME/Chronic Fatigue Syndrome: Not Just Tired All The Time! Dr Alistair Miller 2015 ME/CFS is a complex, long-term, chronic illness affecting an estimated 250,000 people in the UK. This lecture will provide a general account of the history, epidemiology, suggested cause, disease mechanisms and current treatment approaches for ME/CFS. Link to video UK CMRC Conference 2016 Esther Crawley Paediatric CFS/ME, by Dr Esther Crawley (Bristol University) Involving severe and very severely affected CFS patients and M.E. individuals in research - a clinician's point of view, by Victoria Strassheim (Newcastle University). 2016 Link to video Disrupting Your View Of ME TEDxBristol Esther Crawley 2017 S4ME thread Link to video: Part 1 - Part 2 *Other videos Training videos for English GPs on how to deal with CFS patients Link to video Link to video Link to video Link to video Chronic fatigue syndrome - 10 Minute CBT 2013 Link to video *Medically unexplained symptoms Patients with Medically Unexplained Symptoms EADMT Conference 2014 Helen Payne Link to video Dr Jim Bolton presents 'Medically Unexplained Symptoms' Undergraduate Psychiatry Jim Bolton 2015 Be warned, this is a pretty nasty video. Link to video DHP 2015 LIVE - VINCENT DEARY VINCENT DEARY We need to talk about Anne: Towards a multidisciplinary understanding of human suffering 2015 Link to video --------------------------------- Critique of BPS/psychosomatic theories *ME and CFS BPS model Medical, Scientific, Political and Journalistic Pitfalls in the Study of Confusing Illnesses Julie Rehmeyer Santa Fe Institute 2014 When illnesses are confusing, without clear mechanisms or sharply-defined symptoms, they are often considered psychosomatic, and there's a consistent pattern of poor handling by federal agencies, researchers, doctors, and the media. AIDS, multiple sclerosis, chronic Lyme disease, and chronic fatigue syndrome are all cases of this. I'll describe this pattern, focusing on chronic fatigue syndrome in particular, along with my understanding of why it happens. Link to video Pr. James Coyne on poor British and Dutch fatigue studies Unrest presentation (The Nederland) 2017 Link to video ObjectiveEvidence&CFS MEAnalysis 2017 Link to video *The PACE trial The Pace Race MEAnalysis 2012 Link to video How's That Recovery? MEAnalysis 2014 Link to video Dr. David Tuller discusses the flaws of the PACE trial David Tuller 2016 The PACE trial, a research project that should investigate the effects of CBT and GET in CFS is at this moment famous for it's severe and obvious flaws. Nevertheless it was the basis for guidelines in many countries. But for how long? And how long can the Lancet uphold their support for this in scientific terms disastrous research project? Link to video Pre conference Dinner Presentation London 2017 #IIMEC12 David Tuller 2017 Link to video Interview with David Tuller PhD David Tuller 2017 An interview with David Tuller PhD, investigative reporter and academic coordinator at University of California, Berkeley. David discusses his ongoing investigations into the PACE trial, including his dealings with Esther Crawley and Stephen Holgate, of the CMRC. Link to video The death threats campaign UK Column News 2017 Link to video (37.30 - 39.33) S4ME thread Other diseases Conversion Disorder & Somatization Disorder Richard Barnum, M.D. Private Practice of Psychiatry and Previously Forensic Psychiatrist for the State of Massachusetts 2013 This lecture addresses the true definitions of Conversion Disorder and Somatization Disorder in the past DSM and the current DSM and how kids with Ehlers-Danlos are commonly misdiagnosed with these psychiatric disorders. It further explores the actual psychological support needed by patients with Ehlers-Danlos Syndrome and how that help can be impeded with misdiagnosis. Link to video Diane O’Leary, PhD presents - “All in Your Head”: The Problem of Psychogenic Diagnosis for EDS EDS Awareness Diane O’Leary 2016 Link to video “Psychiatric Misdiagnoses in EDS: When is Anxiety not Anxiety?” EDS Awareness Dr. Alan Pocinki 2016 Link to video