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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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April 7/8 NIH State of Knowledge Conference webcast video is now online


East Coast, USA
Here are the links to the State of the Knowledge Workshop on ME/CFS Research video archive.

Day 1: http://videocast.nih.gov/launch.asp?16575
Day 2: http://videocast.nih.gov/launch.asp?16571
Agenda: https://www.infinityconferences.com/InfiniBase/Templates/157557/Agenda.htm

Here is a copy of the agenda for future reference

7:00  8:00 a.m. 	REGISTRATION

8:00  8:05 a.m. 	WELCOME
  	  	  	James M. Anderson, M.D., Ph.D., Division of Program Coordination, Planning and Strategic Initiatives, National Institutes of Health (NIH)

8:05  8:15 a.m. 	OPENING REMARKS
  	  	  	Dennis Mangan, Ph.D., Office of Research on Womens Health, NIH

8:15  8:45 a.m. 	Anthony L. Komaroff, M.D., Harvard Medical School
  	  	  	The Clinical Presentation of Chronic Fatigue Syndrome 

8:45  9:15 a.m. 	Leonard A. Jason, Ph.D., DePaul University
  	  	  	A Focus on Diagnostic Criteria and Case Definitions 
  	  	  	NIH Moderator: Catherine Laughlin, Ph.D., National Institute of Allergy and Infectious Diseases, NIH
  	  	  	Co-Moderator: Harvey J. Alter, M.D., Department of Transfusion Medicine, Clinical Center, NIH

9:15  9:20 a.m. 	Session Overview

9:20  9:40 a.m. 	Ronald Glaser, Ph.D., The Ohio State University
  	  	  	Chronic Fatigue Syndrome and the Pathophysiologyof EBV Infection: Trying to Connect the Dots to Make Sense  

9:40  10:00 a.m. 	John Chia, M.D., EVMED Research
  	  	  	The Pathogenic Role of Enteroviruses in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome  

10:00  10:15 a.m. 	MORNING BREAK

10:15  10:35 a.m. 	Judy A. Mikovits, Ph.D., Whittemore Peterson Institute
  	  	  	XMRV and MLV-Related Viruses in Chronic Fatigue Syndrome  

10:35  10:55 a.m. 	John M. Coffin, Ph.D., National Cancer Institute, NIH
  	  	  	Endogenous Retroviral Origin of XMRV and MLV-like Sequences  

10:55  11:15 a.m. 	Summary and Panel Discussion
  	  	  	NIH Moderator: Basil Eldadah, M.D., Ph.D., National Institute on Aging, NIH

11:15  11:20 a.m. 	Session Overview

11:20  11:40 a.m. 	Gordon Broderick, Ph.D., University of Alberta
  	  	  	Regulatory Imbalance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Network Biology Perspective  

11:40  12:00 p.m. 	Mangalathu Rajeevan, Ph.D., Centers for Disease Control and Prevention
  	  	  	Genomic Studies of Chronic Fatigue Syndrome  

12:00  12:20 p.m. 	Keith W. Kelley, Ph.D., University of Illinois at Urbana-Champaign
  	  	  	From Systemic Infection to Brain Inflammation  

12:20  12:35 p.m. 	Summary and Panel Discussion

12:35  1:30 p.m. 	LUNCH
  	  	  	NIH Moderator: Timothy A. Gondr -Lewis, Ph.D., National Institute of Allergy and Infectious Diseases, NIH
  	  	  	Co-Moderator: David M. Mosser, Ph.D., University of Maryland

1:30  1:35 p.m. 	Session Overview

1:35  1:55 p.m. 	Mary Ann Fletcher, Ph.D., University of Miami, Miller School of Medicine
  	  	  	Immunology of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and GWI  

1:55  2:15 p.m. 	Benjamin Natelson, M.D., Albert Einstein College of Medicine
  	  	  	Chronic Fatigue Syndrome and Fibromyalgia Are Not Always the Same  

2:15  2:30 p.m. 	Summary and Panel Discussion

2:30  2:40 p.m. 	Francis S. Collins, M.D., Ph.D., Director, National Institutes of Health (NIH) 
  	  	  	NIH Moderator: John Kusiak, Ph.D., National Institute of Dental and Craniofacial Research, NIH
  	  	  	Co-Moderator: Shaheen Lakhan, M.D., Ph.D., M.S., M.Ed., Global Neuroscience Initiative Foundation

2:40  2:45 p.m. 	Session Overview

2:45  3:05 p.m. 	Kathleen C. Light, Ph.D., University of Utah
  	  	  	Greater Post-Exercise Gene Expression of Adrenergic and Sensory Receptors and Cytokines in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome versus Multiple Sclerosis, Fibromyalgia, and Healthy Controls  

3:05  3:20 p.m. 	AFTERNOON BREAK

3:20  3:40 p.m. 	Roy Freeman, M.D., Beth Israel Deaconess Medical Center, Harvard Medical School
  	  	  	Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and the Autonomic Nervous System  

3:40  4:00 p.m. 	James Baraniuk, M.D., Georgetown University
  	  	  	Neuroimmunology of Chronic Fatigue Syndrome  

4:00  4:15 p.m. 	Summary and Panel Discussion
  	  	  	NIH Moderator: Cheryl L. McDonald, M.D., National Heart, Lung, and Blood Institute, NIH
  	  	  	Co-Moderator: Kevin P. Davy, Ph.D., Virginia Polytechnic Institute and State University

4:15  4:20 p.m. 	Session Overview

4:20  4:40 p.m. 	Jane Kent-Braun, Ph.D., University of Massachusetts, Amherst Muscle Function and Fatigue in Chronic Fatigue Syndrome  

4:40  5:00 p.m. 	Christopher R. Snell, Ph.D., University of the Pacific/Pacific Fatigue Lab, Stockton, CA Cardiopulmonary Exercise Testing and the Assessment of Fatigue in CFS/ME  

5:00  5:20 p.m. 	Peter C. Rowe, M.D., Johns Hopkins University School of Medicine
  	  	  	Orthostatic Intolerance in Chronic Fatigue Syndrome  

5:20  5:45 p.m. 	Summary and Panel Discussion

[U][B]DAY 2  FRIDAY, APRIL 8[/B][/U]

7:00  8:00 a.m. 	REGISTRATION

8:00  8:15 a.m. 	RECONVENE
  	  	  	NIH Moderator: Donald G. Blair, Ph.D., National Cancer Institute, NIH
  	  	  	Co-Moderator: Samir Khleif, M.D., National Cancer Institute, NIH

8:15  8:35 a.m. 	Nancy Klimas, M.D., University of Miami, Miller School of Medicine
  	  	  	Immune Based Biomarkers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome  

8:35  8:55 a.m. 	Dane B. Cook, Ph.D., University of Wisconsin, Madison
  	  	  	Can Functional Neuroimaging Data Serve as a Biomarker for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?  

8:55  9:15 a.m. 	Michael Dean, Ph.D., National Cancer Institute, NIH
  	  	  	Identifying Genes and Genetic Risk Factors for Complex Diseases  

9:15  9:35 a.m. 	Summary and Panel Discussion
  	  	  	NIH Moderator: Christopher Mullins, Ph.D., National Institute of Diabetes and Digestive and Kidney Diseases, NIH
  	  	  	Co-Moderator: Susan Keay, M.D., Ph.D., University of Maryland School of Medicine; and Veterans Administration Maryland Health Care System

9:35  9:40 a.m. 	Session Overview

9:40  10:00 a.m. 	Fred Friedberg, Ph.D., State University of New York, Stony Brook
  	  	  	Self-Management in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and the Meaning of "Improvement"  

10:00  10:20 a.m. 	Italo Biaggioni, M.D., Vanderbilt University
  	  	  	Chronic Fatigue and Postural Tachycardia Syndromes  

10:20  10:35 a.m. 	MORNING BREAK

10:35  10:55 a.m. 	Theoharis C. Theoharides, M.D., Ph.D., M.S., F.A.A.A.A.I., Tufts University School of Medicine Substance P-Stimulated TNF Secretion from Human Mast Cells Involves Fission and Translocation of Mitochondria with Extracellular DNA Release That Induces Auto-Inflammation, Processes Blocked by the Natural Flavonoid Luteolin  

10:55  11:15 a.m. 	Lucinda Bateman, M.D., Fatigue Consultation Clinic, Salt Lake City
  	  	  	Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome at the Fatigue Consultation Clinic: The Art of Supportive Care Medicine  

11:15  11:45 a.m. 	Summary and Panel Discussion

11:45  1:00 p.m. 	LUNCH
  	  	  	NIH Moderators: John T. Burklow and Marin P. Allen, Ph.D., Office of Communications and Public Liaison, NIH

1:00  1:05 p.m. 	Session Overview  

1:05  1:15 p.m. 	K. Kimberly McCleary, CFIDS Association of America
  	  	  	Communicating with Research Stakeholders  

1:15  1:25 p.m. 	Kenneth J. Friedman, Ph.D., Castleton State College
  	  	  	Elephants in the Room: Acknowledging Impediments to Chronic Fatigue Syndrome Research and Education  

1:25  1:40 p.m. 	Patricia Fero, M.E.P.D., Wisconsin ME/CFS Association, Inc.
  	  	  	3 Generations: A View from Wisconsin
  	  	  	Mary M. Schweitzer, Ph.D., MCEAS, University of Pennsylvania
  	  	  	The Role for Internet in Communication  

1:40  1:50 p.m. 	John T. Burklow, Office of Communications and Public Liaison, NIH 

1:50  2:15 p.m. 	Summary and Panel Discussion 

2:15  2:30 p.m. 	AFTERNOON BREAK
  	  	  	NIH Moderator: Dennis Mangan, Ph.D., Office of Research on Women's Health, NIH
  	  	  	Co-Moderator: Suzanne D. Vernon, Ph.D., CFIDS Association of America

2:30  4:45 p.m. 	All Speakers and Co-Moderators
  	  	  	 Summary of Each Session
  	  	  	 Responses by Department of Health and Human Services Federal Agencies
  	  	  	 Full Workshop Panel Discussion  

4:45  5:00 p.m. 	CLOSING COMMENTS
  	  	  	Vivian W. Pinn, M.D., Office of Research on Women's Health, NIH


Senior Member
Thanks for this, LJS, and thanks to Cort for the first report from the workshop!

Two questions for those of you who have seen the entire workshop:

1. If you were to recommend say five of the presentations (or discussions) to a medical team just starting to learn about ME/CFS, which would you recommend? I e: Which were the best presentations? (bringing home the message that this certainly is a biomedical disorder)

2. And the opposite: which parts should they not be watching?

We've got a newly started ME/CFS project here, and we'd like to guide the doctors and other medical staff to the best information, making it as accessible as possible. We're thinking we'll hand them a USB with the workshop, plus a paper with recommendations of presentations, marking exactly where they're at on the recording (time wise, if anyone has done this, please share - for example, Bateman starts at xx.xx)

Grateful for your input!