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IACFSME 2016 conference agenda is up

Kati

Patient in training
Messages
5,497
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
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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
 

Kati

Patient in training
Messages
5,497
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
 

Solstice

Senior Member
Messages
641
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

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

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

Anyone know a bit more about those?

The conference looks very good all in all.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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
Anyone know a bit more about those?
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.
 
Messages
15,786
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
This sounds like a CPET study - he's a cardiologist but doesn't look like he's done CFS research before.

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
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.

Music, Meditation, and Movement (Patient Workshop)
Judy-Anne Wilson

Educator and artist
Treasurer, ME Society of Edmonton, Canada
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:
Vocalization is so healing. It can create spiritual awakenings, cleans the body, mellow the mind, and up lift the soul
Through exploring an intimate, intrinsic, inner connection with your voice, using breathing and vocal exercises, healing and growth are experienced.
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 :)
 

osisposis

Senior Member
Messages
389
Looks like a blast :rocket:

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


why would they not be? GWI/ME/CFS = GWI/MCS/FM.IBS,TBI/PTSD GWI research has contributed quite a bet to the understanding about to come forth in ME/CFS as far as chemical exposures leading to severe hypersensitivities, loss of tolerance, homeostasis, infection, autoimmunity,autoinflammatory, ME/CFS
 

Cheshire

Senior Member
Messages
1,129
This sounds like a CPET study - he's a cardiologist but doesn't look like he's done CFS research before.

He's been working with Montoya since at least 2010:
François Haddad, MD, clinical assistant professor of medicine in the division of cardiovascular medicine, is working with our patients using a sub-maximal effort exercise testing machine to find an objective method to assess fatigue and physical impairment.
http://phoenixrising.me/archives/2026
 

Yogi

Senior Member
Messages
1,132
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

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.
 
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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.
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. :)
 

Yogi

Senior Member
Messages
1,132
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. :)

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.
 
Messages
38
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.

The MEA had someone at the tribunal. AfME did not.
 

Jo Best

Senior Member
Messages
1,032
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