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IACFSME 2016 conference agenda is up

Discussion in 'General ME/CFS News' started by Kati, Aug 23, 2016.

  1. Kati

    Kati Patient in training

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    http://iacfsme.org/Conferences/2016-Fort-Lauderdale/Agenda/Professional-Agenda.aspx

    October 27, 2016. IACFS/ME Conference Keynote Presentation
    New ME/CFS Developments at the National Institutes of Health

    Dr. Whittemore received her Ph.D. in anatomy from the University of Minnesota, followed by post-doctoral work at the University of California, Irvine, and a Fogarty Fellowship at the Karolinska Institute in Stockholm, Sweden. She was on the faculty of the University of Miami School of Medicine in The Miami Project to Cure Paralysis prior to working with several non-profit organizations including the Tuberous Sclerosis Alliance, Genetic Alliance, Citizens United for Research in Epilepsy (CURE), and the National Coalition for Health Professional Education in Genetics (NCHPEG). She also served a four-year term on the National Advisory Neurological Disorders and Stroke Council.

    Dr. Whittemore has been a strong voice for increasing the research commitment for ME/CFS at the NIH. This includes launching a research protocol at the NIH Clinical Center to intensively study individuals with ME/CFS and re-invigorating the efforts of the Trans-NIH ME/CFS Research Working Group. The working group, co-chaired by Dr. Whittemore, consists of representatives from 23 NIH institutes that help to support extramural ME/CFS research. Dr. Vicky Whittemore is also the NIH representative to the U.S. Department of Health and Human Services' Chronic Fatigue Syndrome Advisory Committee.


    PLENARY SPEAKER: Dr. Øystein Fluge, Chief Physician, Department of Oncology, Haukeland University Hospital, University of Bergen, Norway
    upload_2016-8-23_20-5-20.png
    Dr. Fluge is Chief Physician in the Department of Oncology at Haukeland University Hospital, University of Bergen, Norway. He received his medical degree in 1988 from the University of Bergen and has specialized in oncology since 2004. He has conducted research at the Surgical Institute and Department of Molecular Biology, University of Bergen and has been funded as a Research Fellow by the Norwegian Cancer Society.
    In 2004, Dr. Fluge and his colleague, Dr. Olav Mella, a neurologist at the same institution, noticed that a patient’s ME/CFS symptoms improved substantially while undergoing chemotherapy treatment for a concurrent diagnosis of lymphoma. This was followed by a pilot study in 2009 with positive results. In 2011, Dr. Fluge, Dr. Mella, and their colleagues published a randomized double-blind placebo-controlled trial of rituximab in 30 ME/CFS patients demonstrating that two-thirds of the intervention group experienced moderate to major improvements in their ME/CFS symptoms. For a medical condition with no disease-modifying treatments, this was a ground-breaking study. Currently, they are in the midst of attempting to replicate their results in a larger Phase III multi-center study in Norway.
    12th International IACFS/ME Biennial Clinical and Research Conference
    Emerging Science and Clinical Care
    Thursday, October 27th


    9:30 am – 12:30 pm
    Professional workshops (run concurrently; attendees select one only)


    Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities/Environmental Sensitivities: Office Assessment and Management
    Alison Bested, M.D., F.R.C.P.C.
    Clinical associate professor, Department of Medicine, University of British Columbia

    Acute and Chronic Enteroviral Infection
    John Chia, M.D.
    UCLA School of Medicine

    How Cardiopulmonary Exercise Testing Informs Pathology and Treatment
    Staci Stevens, M.A.
    Founder, WorkWell Foundation

    1:30 pm – 4:30 pm
    Professional workshops (run concurrently; attendees select one only)


    Behavioral Assessment and Treatment of ME/CFS and Fibromyalgia
    Fred Friedberg, Ph.D.
    President, IACFS/ME
    Research Associate Professor, Stony Brook University
    Founder and Editor, Fatigue: Biomedicine, Health and Behavior

    Diagnosing and Treating Orthostatic Intolerance
    Peter Rowe, M.D.
    Johns Hopkins University School of Medicine

    NIH Grant Writing Workshop
    Vicky Whittemore, Ph.D.
    Program Director, Channels, Synapses and Circuits
    National Institute of Neurological Disorders and Stroke


    General Session Agenda-Friday, October 28th

    8:00 am – 8:15 am
    Welcome and Introduction
    Fred Friedberg, Ph.D.
    President, IACFS/ME
    Research Associate Professor, Stony Brook University
    Founder and Editor, Fatigue: Biomedicine, Health and Behavior

    8:15 am – 9:00 am (last 15 min. are Q and A)
    Plenary Session
    B-lymphocyte depletion and disease mechanisms in ME/CFS
    Oystein Fluge, M.D.
    Chief Physician, Department of Oncology,
    Haukeland University Hospital, University of Bergen, Norway

    Paper Sessions following short paper presentations each 12 minutes in length, presenters will field questions written on cards by the audience and given to the chair as time permits.

    9:00 am – 10:15 am
    Session 1: The Latest Research in Immunology and the Microbiome
    Session Chair: Sonya Marshall-Gradisnik, Ph.D.
    Professor of Immunology, Griffith University, Australia

    Exercise testing highlights differences in cytokine profile and network between patients with chronic fatigue syndrome and healthy sedentary participants
    Francois Haddad, M.D., Director, Biomarker and Phenotypic Core Laboratory, Stanford Cardiovascular Institute

    A panel of biomarkers accurately identifies CFS/ME patients and contributes to the understanding of the pathophysiology of the disorder
    Kenny L. De Meirleir, M.D., Nevada Center for Biomedical Research at University of Nevada

    A profile of circulating cytokines is associated with disease severity in chronic fatigue syndrome patients
    Jose G. Montoya, M.D., Stanford University School of Medicine

    Alterations in the enteric bacterial and viral microbiome in ME/CFS
    Ludovic Giloteaux, Ph.D., Department of Molecular Biology and Genetics, Department of Microbiology, Cornell University

    10:15am – 10:45 am
    Break/Visit Exhibits

    10:45 am – 12:15 pm
    Session 2: Treatment Studies and Clinical Practice
    Chair: Daniel Peterson, M.D.
    Griffith University, Gold Coast, Australia
    Owner, Sierra Internal Medicine, Incline Village, Nevada

    Reflections on the rituximab trials
    Olav Mella, M.D., Department director/professor, Haukeland University Hospital, Oslo, Norway

    Synergy Trial for CFS – a phase 2 study of low-dose methylphenidate plus mitochondrial support
    Lucinda Bateman, M.D., Bateman Horne Center of Excellence

    N-Acetylcysteine alleviates cortical glutathione deficit and improves symptoms in CFS:
    An in vivo validation study using proton magnetic resonance spectroscopy
    Dikoma Shungu, Ph.D., Departments of Radiology, Neurology and Neuroscience, Weill Cornell Medicine

    A re-examination of the cognitive behavioral theory of CFS
    Madison Sunnquist, DePaul University

    Potential for an immunosignature assay to aid in classification and prediction of rituximab response in ME/CFS
    David Patrick, M.D., FRCPC, MHSc, University of British Columbia School of Population and Public Health

    12:15 pm – 1:45 pm
    Lunch Break/Visit Exhibitors

    Special Lunch Session: ME/CFS studies at the Centers for Disease Control and Prevention
    Multi-site Clinic Assessment of ME/CFS (MCAM)
    Chair: Elizabeth R. Unger, M.D., Ph.D.
    Chief, Chronic Viral Diseases Branch
    Centers for Disease Control and Prevention (CDC)

    Study design of the multi-site clinic assessment of ME/CFS (MCAM)
    Elizabeth R. Unger, M.D., Ph.D.
    Jin-Mann S. Lin, Ph.D., Senior statistician/epidemiologist, US Centers for Disease Control and Prevention

    Description of the Multi-site Clinic Assessment of ME/CFS (MCAM) Study
    Mangalathu Rajeevan, Ph.D., Research Microbiologist, US Centers for Disease Control and Prevention

    Data on cognitive function from Multi-Site Clinical Assessment of Myalgic Encephomyelitis/Chronic Fatigue Syndrome (MCAM) – Preliminary Analysis
    Gudrun Lange, Ph.D., Consulting Clinical Neuropsychologist, Mount Sinai Beth Israel Pain and Fatigue Study Center.

    Exercise testing data from the Multi-Site Clinic Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) Study
    Dane Cook, Ph.D., Professor ofKinesiology, University of Wisconsin-Madison

    Salivary test data from the Multi-site Clinic Assessment of Myalgic Encephomyelitis/Chronic Fatigue Syndrome (ME/CFS) (MCAM) Study
    Jin-Mann S. Lin, Ph.D., Senior statistician/epidemiologist, US Centers for Disease Control and Prevention

    Pilot study evaluating impact of sample processing and assay format on measured natural killer cell function
    Troy Querec, Ph.D., Associate Service Fellow, Associate Service Fellow

    1:45 pm – 2:45 pm
    Session 3: Gulf War Illness
    Session Co-chairs:
    Kristy Lidie, Ph.D., US Department of Defense
    Victor Kalisinsky, Ph.D., US Department of Veterans Affairs
    Gulf War Illness Program Officers

    Gulf war illness and chronic fatigue syndrome: lessons learned
    Presenter: Lea Steele, Ph.D., Research professor, Baylor University Institute of Biomedical Studies

    Brain Immune Interactions in Gulf War Illness: Cytokines and Cognition in US Military Veterans
    Kimberly Sullivan, Ph.D., Boston University Medical Campus

    Genomic approach to find mechanisms of Gulf War Illness pathobiology
    Lubov Nathanson, Ph.D., Institute for Neuro Immune Medicine, Nova Southeastern University

    Using gene expression signatures to identify novel treatment strategies in Gulf War Illness
    Travis Craddock, Ph.D., Department of Psychology & Neuroscience, Nova Southeastern University

    2:45 pm – 3:15pm
    Break/Visit Exhibits

    3:15 pm – 5:15 pm
    Session 4: Diagnosing CFS/ME; Difficult Clinical Cases: Focus on Fatigue and Pain
    Session Chair: Nancy Klimas, M.D.
    Immediate Past President, IACFS/ME
    Professor of Medicine & Director, Nova Southeastern University
    Director, Miami VAMC Gulf War Illness & ME/CFS Research Program

    Panel:
    Lucinda Bateman, M.D., Bateman Horne Center of Excellence, Utah
    John Chia, M.D., UCLA School of Medicine
    Charles Lapp, M.D., Hunter-Hopkins Center, North Carolina
    Dan Peterson, M.D., Sierra Internal Medicine, Incline Village, Nevada
    Katherine Rowe, M.D., Royal Children's Hospital , Australia
    Peter Rowe, M.D., Johns Hopkins University School of Medicine

    5:15 pm – 6:00 pm
    Visit Poster Presentations/Exhibits

    Evening Session
    6:30 pm – 8:30 pm
    Common Data Elements (CDEs) for Standardized Testing and Clinical Studies
    Chair: Vicky Whittemore, Ph.D.
    Program Director, Channels, Synapses and Circuits
    National Institute of Neurological Disorders and Stroke

    The National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health and the Center for Disease Control and Prevention (CDC) will partner to develop common data elements (CDEs) for standardized testing and common data elements to be recorded in clinical studies/trials of individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The development of CDEs for ME/CFS will facilitate the comparison of results across studies and help to standardize analysis. The session will be led by NINDS and CDC Program Staff to discuss the timeline and process for developing the CDEs and to obtain feedback and input from ME/CFS stakeholders.


    General Session Agenda-Saturday, October 29th

    8:00 am – 9:00 am
    Session 5: CFS, SEID, ME Case Definitions: Clinical vs. Research Criteria
    Presenter: Leonard Jason, Ph.D.
    Professor, DePaul University, Director of the Center for Community Research

    Discussants:
    Lucinda Bateman, M.D.
    Chief Medical Officer
    Bateman Horne Center of Excellence
    Salt Lake City, Utah

    Jon Kaiser, M.D.
    IACFS/ME Board Member
    University of California, San Francisco

    9:00 am – 10:00 am
    Session 6: Symptom Provocation Studies I
    Chair: Staci Stevens, M.A.
    Founder, WorkWell Foundation

    Cardiopulmonary exercise testing demonstrates post-exertional chronotropic incompetence
    Mark Van Ness, Department of Health, Exercise, and Sport Science, University of the Pacific

    Post-exertional malaise: multiple and unexpected symptoms, sometimes delayed, often prolonged
    Lily Chu, M.D., Stanford University School of Medicine

    Cognitive function in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis:
    A novel paradigm
    Sarah Knight, Ph.D., Murdoch Children’s Research Institute, Australia

    10:00 am – 10:30 am
    Break/Visit Exhibits

    10:30 am – 12:00 pm
    Session 7: Public Health Research
    Chair: Steve Krafchick, MPH, JD
    IACFS/ME Board Member

    Estimating rates of pediatric chronic fatigue syndrome and myalgic encephalomyelitis in a community-based sample
    Leonard A. Jason, Ph.D., DePaul University

    Two year follow-up of impaired range of motion in adolescent chronic fatigue syndrome
    Peter C. Rowe, M.D., Johns Hopkins University School of Medicine

    Allergic disorder phenotypes in ME/CFS and patterns of medical comorbidity and clinical dysfunction
    Susan Levine, M.D., Cornell Medical Center, New York City

    Exploring the role of sex hormones in driving symptom severity in ME/CFS
    Gordon Broderick, Ph.D., Department of Medicine, University of Alberta

    Nurses’ acute fatigue predicts sickness absence in the workplace: a 1-year retrospective cohort study
    Knar Sagherian, RN, MSN, University of Maryland School of Nursing

    Examining the accuracy of a physical diagnostic technique for chronic fatigue syndrome/myalgic encephalomyelitis: a blind controlled study
    Ray Perrin, DO, Ph.D., Honorary Senior Lecturer: Allied Health Professions Research Unit, University of Central Lancashire, UK


    12:00 pm – 1:30 pm
    Lunch Break/Visit Exhibits

    Lunch Panel
    Special Interest Groups: International Research Networks
    David Patrick, Ph.D., Moderator
    Professor and Director
    School of Population and Public Health
    University of British Columbia, Canada

    European network on myalgic encephalomyelitis/chronic fatigue syndrome (EUROMENE)
    Eliana Lacerda, M.D., Ph.D., Assistant Professor, London School of Hygiene & Tropical Medicine

    The case for stratification in ME/CFS: Experience from the UK ME/CFS Biobank
    Luis Nacul, M.D., Ph.D.
    London School of Hygiene & Tropical Medicine

    1:30 pm – 2:30 pm
    Session 8: Research on Autonomic Functioning and Comorbidities
    Chair: Peter Rowe, M.D., Johns Hopkins University School of Medicine

    Postural tachycardia in chronic fatigue syndrome induced by exercise
    Madison Keefe, B.S., Georgetown University

    Distribution of dolorimetry in CFS, FM, GWI and control women
    Amber Surian, M.S., Department of Medicine, Georgetown University

    Truncal ataxia is an unrecognized cause of orthostatic intolerance in patients with myalgic encephalomyelitis
    Kunihisa Miwa, M.D.
    Miwa Naika Clinic, Japan

    2:30 pm – 3:30 pm
    Session 9: Advances in Brain Research and Neurological Studies
    Chair: Anthony L. Komaroff, M.D., Professor of Medicine, Harvard Medical School (retired)

    Assessment of neurobiological dysfunction in chronic fatigue syndrome
    Ben Natelson, M.D.
    Pain & Fatigue Study Center, Mount Sinai Beth Israel

    Disrupted functional connectivity in Gulf War illness (GWI)
    James N. Baraniuk, M.D., Department of Medicine, Georgetown University

    Functional neural consequences of post-exertion malaise in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
    Dane B. Cook, Ph.D., University of Wisconsin-Madison

    3:30 pm – 4:00 pm
    Break/Visit Exhibits

    4:00 pm – 5:00 pm
    Visit Poster Presentations/Exhibits

    5:00 pm – 6:00 pm
    IACFS/ME Membership Business Meeting

    6:00 pm – 7:00 pm
    IACFS/ME Social/Cocktails Hour

    7:00 pm – 8:00 pm
    IACFS/ME Banquet Dinner

    8:00 pm – 9:00 pm
    Awards Presentation


    General Session Agenda-Sunday, October 30th

    8:00 am – 9:15 am
    Session 10: Symptom Provocation Studies II
    Chair: Betsy Keller, Ph.D.
    Department of Exercise and Sport Sciences, Ithaca College

    Blood lactate increases more rapidly after a previous exercise challenge in patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) than in healthy subjects
    Katarina Lien, M.D., Ph.D., University of Oslo

    Subsets of ME/CFS patient responses to a 2-day CPET
    Betsy Keller, Ph.D., Department of Exercise and Sport Sciences, Ithaca College

    Neuromuscular Strain Increases Symptom Intensity in Chronic Fatigue Syndrome
    Peter Rowe, M.D, Johns Hopkins University School of Medicine

    Polar Metabolites Distinguish ME/CFS Patients and Controls
    Maureen Hanson, Ph.D., Department of Molecular Biology and Genetics, Cornell University

    9:15 am – 10:30 am
    Session 11: Genetics Research
    Chair: Jose Montoya, M.D.
    Professor of Medicine, Stanford University Medical Center

    Single nucleotide polymorphisms in myalgic encephalomyelitis: possible genetic factors influencing pathophysiology
    Benjamin Eike, B.A., Nova Southeastern University, College of Osteopathic Medicine

    Using gene expression modules to identify gender specific treatments in myalgic encephalomyelitis/chronic fatigue syndrome
    Mary G. Jeffery, Institute for Neuro-Immune Medicine, Nova Southeastern University

    Epigenetic modifications and glucocorticoid sensitivity in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
    Wilfred de Vega, Ph.D. Can.
    University of Toronto

    ME/CFS miRNA analysis, mRNA in-situ hybridization and STAT1 localization upon stress trigger
    Paula A. F. Waziry, Ph.D., Institute of Neuro Immune Medicine, Nova Southeastern University

    Genomics of chronic fatigue syndrome reveals systemic inflammatory response
    Jose G. Montoya. M.D., Stanford University School of Medicine

    10:30 am – 10:45 am
    Break

    10:45 am – 12:15 pm
    Session 12: Panel Discussion
    “Nothing about us without us:” How community-engaged research can accelerate progress in the field of ME/CFS
    Moderator: Lily Chu, M.D., MSHS, Co-Vice President, IACFS/ME; Collaborator, Stanford ME/CFS Initiative

    Speaker: William Elwood, Ph.D., Expert, community-engaged research, US National Institutes of Health (NIH) Member, Trans-NIH Working Group for ME/CFS

    Panelists
    Jin-Mann Lin, Ph.D., Senior statistician/epidemiologist, US Centers for Disease Control and Prevention
    Leonard Jason, Ph.D., Professor of community psychology, DePaul University (Chicago, Illinois)
    Sonya Chowdhury, Chief Executive, Action for M.E.; Member, United Kingdom ME/CFS Research Collaborative
    Jennifer Spotila, J.D., FDA Patient Representative; former chairman, Solve ME/CFS Initiative Board of Directors

    12:15 pm – 1:15 pm
    Lunch/Visit Exhibits
    Networking Lunch - Offering an opportunity for clinicians to network and talk about assessment and treatment issues.

    1:15 pm – 2:30 pm
    Session 13: Medical Education Proposals for ME/CFS
    Panel Chair: Susan Levine, M.D., Visiting Fellow, Cornell University, Ithaca, NY

    Fellowship program for CFS/ME research (I)
    Mady Hornig, M.D., Columbia University Medical Center

    A fellowship training program for ME/CFS (II)
    Anthony Komaroff, M.D., Harvard Medical School (retired)

    Fellowship opportunity in ME/CFS (III)
    Daniel Peterson, M.D., Simmaron Research

    2:30 pm – 3:00 pm
    Summary of the Conference
    Anthony L. Komaroff, M.D.

    3:00pm
    Conference Concludes
     
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  2. Hutan

    Hutan Senior Member

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    Wow, this is something to look forward to.

    @Jill

    Anyone know why there is nothing from the Ron Davis/Naviaux teams?
     
    Susanna D and mango like this.
  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    The professional conference looks fabulous! Anyone know if patients and family members are welcome at the professional conference?
     
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  4. Kati

    Kati Patient in training

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    Usually anyone can attend, it's just that the cost is fairly steep to attend the whole thing. Www.iacfsme.org
     
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  5. Kati

    Kati Patient in training

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    Here is the patient agenda, some very interesting presentations:

    12th International IACFS/ME Joint Patient and Professional Conference

    Thursday, October 27th

    8:00 am – 8:10 am

    Welcome & Introduction
    Fred Friedberg, Ph.D.
    President, IACFS/ME
    Research Associate Professor, Stony Brook University
    Founder and Editor, Fatigue: Biomedicine, Health, and Behavior

    8:10 am – 8:20 am TBA

    8:20 am – 9:15 am (last 15 min.: Q and A)
    New ME/CFS Developments at the National Institutes of Health
    Keynote Speaker: Vicky Whittemore, Ph.D.
    Program Director, Channels, Synapses and Circuits
    National Institute of Neurological Disorders and Stroke

    9:15 am – 10:00 am (last 15 min.: Q and A)
    Rituximab and Emerging Treatments
    Daniel Peterson, M.D.
    Sierra Internal Medicine
    Oystein Fluge, MD
    Chief Physician, Department of Oncology,
    Haukeland University Hospital, University of Bergen, Norway
    Olav Mella, MD
    Department director/professor, Haukeland University Hospital, Oslo, Norway

    10:00 am – 10:30 am
    Break/Visit Exhibits


    10:30 am – 11:15 am (last 15 min.: Q and A)
    Ensuring effective and efficient medical appointments: What can patients and caregivers do?
    Lily Chu, M.D.
    Independent Consultant
    Co-Vice President, IACFS/ME

    11:15 am – 11:45 am (last 10 min.: Q and A)
    If not opioids, then what?
    Jarred Younger, Ph.D.
    Associate Professor
    University of Alabama at Birmingham

    11:45 am – 1:15 pm
    Lunch Break/Visit Exhibits
    Advocacy Roundtable

    1:15 pm – 3:00 pm
    Patient workshops (run concurrently; attendees select one only)

    Legal Issues with ME/CFS--Myths and Reality (Joint Patient and Professional Workshop)
    Steven Krafchick, J.D., M.P.H.
    Krafchick Law Firm
    IACFS/ME Board Member

    Educating students suffering from ME/CFS—a Global Perspective (Joint Patient and Professional Workshop)
    Faith Newton, Ed.D.
    Associate Professor of Education
    Delaware State University

    Moving ME/CFS Forward Internationally (Joint Patient and Professional Workshop)
    Margaret Parlor
    President, National ME/FM Action Network (Canada)
    Mary Dimmock, Advocate and Author

    Music, Meditation, and Movement (Patient Workshop)
    Judy-Anne Wilson
    Educator and artist
    Treasurer, ME Society of Edmonton, Canada

    Pacing Approaches, Healing Time, and Other Techniques to Help Lessen ME/CFS Symptoms (Patient Workshop)
    Jon Kaiser, M.D.
    University of California, San Francisco

    4:00 pm – 5:00 pm (last 15 min. Q and A)
    Fibromyalgia Update
    Lucinda Bateman, M.D.
    Fatigue Consultation Clinic
    Jarred Younger, Ph.D.
    Associate Professor
    University of Alabama at Birmingham
    Following each talk, speakers will field questions written on cards by the audience as time permits

    Evening sessions TBA
     
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  6. Groggy Doggy

    Groggy Doggy Senior Member

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    Looks like a blast :rocket:

    Don't know why GWI is included, and also a Fibromyalgia Update?
     
  7. Solstice

    Solstice Senior Member

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    Anyone know a bit more about those?

    The conference looks very good all in all.
     
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  8. Bob

    Bob

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    Only that the speaker is from DePaul university, and a colleague of Lenny Jason, so this should be a sensible presentation.
     
  9. Bob

    Bob

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    I think this is the CDC's multi-site study, so we should find out a bit more about the exercise testing that they are carrying out. It was planned to be a one-day exercise text, along with post-exercise cognition tests (e.g. at 0, 12 or 24 hours after exercise, but I can't remember the precise details). With the possibility of adding some two-day exercise testing to the study at a later stage.
     
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  10. Sidereal

    Sidereal Senior Member

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    Intriguing. Miwa's published papers are always fire so I look forward to this abstract. I have no idea what "truncal ataxia" is.
     
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  11. Valentijn

    Valentijn Senior Member

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    This sounds like a CPET study - he's a cardiologist but doesn't look like he's done CFS research before.

    Interesting for me, because NAC does help me with the "wired-but-tired" sensation when I need to sleep. Or just the "wired" brain during the day. It looks like he's a neurologist and has done previous research into lactate in the brain and spinal fluid in ME/CFS. Past studies have been pretty small, but maybe this one is a bit bigger.

    Based on her website, sounds pretty quacky and focused on her experience of "chronic fatigue" and fibromyalgia. Her "Music, Movement and ______" for conferences and clinics sound ridiculously active for ME patients. A couple quotes from her site:
    I think I'll stick with showers for "cleansing the body," and medical science for "healing" :p

    Overall, the patient offerings look pretty mediocre. But the sessions for professionals look very exciting :)
     
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  12. A.B.

    A.B. Senior Member

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    So much interesting stuff in there.
     
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  13. osisposis

    osisposis Senior Member

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  14. Cheshire

    Cheshire Senior Member

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    He's been working with Montoya since at least 2010:
    http://phoenixrising.me/archives/2026
     
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  15. Yogi

    Yogi Senior Member

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    This is great line up of people and sure to be an excellent conference.

    However surprised to see Sonya Chowdhury there as AFME of the only charity to support PACE trial does not represent ME patients ( they do not even allow patients to become voting members). There are so many charities such as ME Association that do represent patients I do not understand why she was invited. The silver lining is some of this biomedical stuff may rub off on her & AFME. I think AFME are also supporting another PACE trial style trial by Esther Crawley. AFME do not represent ME patients.
     
    Last edited: Aug 24, 2016
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  16. AndyPR

    AndyPR Senior Member

    I'm very tired atm so I might not remember correctly but is it not AYME who are supporting the trial? MAGENTA is it? AYME didn't write to support releasing the PACE data, AFME did - I don't really know any history of AFME but I've seen people commenting that they have changed their stance to more support patients recently. Or I could be totally wrong. :)
     
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  17. Yogi

    Yogi Senior Member

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    1. AYME are supporting MAGENTA (PACE childrens trial)
    2. AFME did write but they felt they had to and really had no choice given the scrutiny by Tuller, Coyne, Julie Rehmeyer, Centre for Welfare Reform reports, etc for their own survival long term. I don't think patient interests really come into it but their own survival as charity interest. They could have done something on PACE trial but chose to stay quiet for all these years. They gave it approval to go ahead.
    3. It appeared that AFME may have become ever so slightly less worse and slightly less damaging to patients interests. However they then did this:
    http://forums.phoenixrising.me/inde...evalence-study-funded-by-action-for-me.44622/
    4. If you ever notice on AFME's web and twitter pages they rarely post or tweet any critical stuff of PACE (unlike MEA) unless its already so well publicised and everyone knows about it already. They keep their followers very blind to all the PACE critical stuff.
     
    Hutan and TiredSam like this.
  18. AR68

    AR68

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    The MEA had someone at the tribunal. AfME did not.
     
    Hutan, Yogi, Solstice and 4 others like this.
  19. Jo Best

    Jo Best Senior Member

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    The Legal Issues with ME/CFS workshop sounds interesting.
    Just cross referencing to the two-day biomedical research into ME colloquium in June in London where some of the topics were on the agenda - http://investinme.eu/BRMEC Colloquiums.shtml#BRMEC6
    Zaher Nahle included some comments on the colloquium in his report -
    http://solvecfs.org/report-from-the-invest-in-me-research-conference-in-london
    Full presentations from the one day public conference are on DVD -
    http://investinme.eu/IIMEC11.shtml#dvd
     
  20. Helen

    Helen Senior Member

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    Very interesting.
     
    Cornishbird, Sushi, MEMum and 3 others like this.

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