7 en 8 april; NIH workshop State of the Knowledge ME/CFS

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7 en 8 april; NIH workshop State of the Knowledge ME/CFS

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Volgende week is er een tweedaagse workshop georganiseerd door de NIH in amerika over ME/CFS. Stand van zaken t.a.v. kennis over me/cvs.

Het lijkt erop dat er ook een webcast is, zodat wij hopelijk ook mee kunnen kijken. Ik kan het even niet vinden, maar vooralsnog lijk je je niet te hoeven aanmelden maar kan je gewoon op de tijd dat het programma begint via deze link kijken.

http://videocast.nih.gov/summary.asp?live=10098

Ik kan nog nergens sprekers vinden, maar wellicht wordt dat de komende dagen nog bekend gemaakt.
________

Preliminary Agenda

DAY 1 – THURSDAY, APRIL 7
8:00 – 8:05 WELCOMING
8:05 – 8:15 OPENING
8:15 – 9:15 PLENARY TALKS
9:15 – 10:45 INFECTIOUS DISEASES
10:45 – 11:00 Morning Break
11:00 – 12:15 SYSTEMS BIOLOGY
12:15 – 1:00 Lunch (On your own)
1:00 – 2:00 IMMUNOLOGY
2:00 – 3:15 NEUROLOGY
3:15 – 3:30 Afternoon Break
3:30 – 5:00 EXERCISE PHYSIOLOGY AND ENERGY METABOLISM

DAY 2 – FRIDAY, APRIL 8
8:00 – 8:15 Reconvene
8:15 – 10:20 DIAGNOSIS AND BIOMARKERS
10:20 – 10:35 Morning Break
10:35 – 12:30 TREATMENT
12:30 – 1:30 Lunch (On your own)
1:30 – 2:30 COMMUNICATION OUTREACH
2:30 – 2:45 Afternoon Break
2:45 – 4:45 SUMMARY AND CONCLUSIONS
4:45 – 5:00 CLOSING
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7 en 8 april; NIH workshop State of the Knowledge ME/CFS

Bericht door poppetje »

Niet vergeten, donderdag en vrijdag state of the knowledge congres in Amerika.
Live te volgen via webcast. http://videocast.nih.gov/summary.asp?live=10098

De sprekers zijn inmiddels bekend:
https://www.infinityconferences.com/Inf ... Agenda.htm

Best veel interessante sprekers: Zie hieronder de voorlopige agenda:

Preliminary Agenda

DAY 1 – THURSDAY, APRIL 7

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 Women’s Health, NIH


PLENARY OVERVIEW

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

INFECTIOUS DISEASES

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


SYSTEMS BIOLOGY

NIH Moderator: Basil Eldadah, M.D., Ph.D., National Institute on Aging, NIH
Co-Moderator
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 a.m. – 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

IMMUNOLOGY

NIH Moderator: Timothy A. Gondré -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)


NEUROLOGY

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


EXERCISE PHYSIOLOGY AND ENERGY METABOLISM

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


DAY 2 – FRIDAY, APRIL 8


7:00 – 8:00 a.m. REGISTRATION
8:00 – 8:15 a.m. RECONVENE


DIAGNOSIS AND BIOMARKERS

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


TREATMENT

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 a.m. – 1:00 p.m. LUNCH


OPPORTUNITIES FOR COMMUNICATION (A Panel Discussion)

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


SUMMARY

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


Sponsored by
The Office of Research on Women's Health,
National Institutes of Health (NIH)
In collaboration with
The Trans-NIH ME/CFS Research Working Group
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marry
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Bericht door marry »

Prachtige agenda en wat een diversiteit aan verschillende artsen en onderwerpen omtrent ME.

Dit zou verplichte kost moeten zijn voor iedere medici.

Marry
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Esther
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Jaloersmakende agenda. Vrees alleen dat de zogenaamde zelfbenoemde CVS experts uit beider Lage Landen niet in de zaal zullen zitten. Ben wel blij verrast te zien dat het wordt uitgezonden via video webcast. Even tijdsverschil berekenen en dan met 2 liter water en een zak chips languit voor de laptop.

Zou dit dan echt ons jaar gaan worden? Hup Amerika hup! =D>

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Esther

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poppetje
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Misschien kunnen we voor de zogenaamde zelfbenoemde heren CVS experts uit de lage landen een mooi verslagje van het congres van de ECHTE experts maken en in ons glossy zetten :wink:
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Lieve Allemaal,

Niet vergeten vandaag. De start van de tweedaagse conferentie State of the Knowledge on ME/CFS. Phoenix Rising stuurde net ook een herinnering en lijkt enthousiast over de vele sprekers en de veelvoud aan onderwerpen. Zie hieronder. Het gehele congres is te volgen via een webcast !!! http://videocast.nih.gov/summary.asp?live=10098

Welcome to the April 7th Phoenix Rising Newsletter!


The State of the Knowledge Workshop is here and it's a good one. A hearty congratulations to Pat Fero, Mary Schweitzer, Ken Friedman, Dr. Jason, Dr. Klimas, Dr. Vernon and Dennis Mangan for what they've produced. The last NIH Workshop/Conference of this sort was the Neuroimmune Conference of eight years ago and was filled with NIH researchers who had little or no experience with CFS. This conference on the other hand is packed with ME/CFS researchers.

After overviews by Dr. Komaroff (who else?) and Dr. Jason (who else?) on characterizing and defining ME/CFS the Workshop jumps into four 20 minute presentations on EBV (Glaser), enteroviruses (Chia) and XMRV (Mikovits/Coffin). Then its onto Systems Biology section which should be interesting given the news that Gordon Broderick is really onto something with his work with Dr. Klimas, Dr. Fletcher and Dr. Vernon. The Kelley talk "From Systemic Infection to Brain Inflammation" will be intriguing given that broadly speaking the idea of an infection spurring changes in the brain activity may be the most 'sought-after' model for CFS.

Dr. Fletcher is next. She and Dr. Klimas have been at the forefront of immunological research into CFS for two decades. Recently they released a paper that validated their NK cell findings in a big way and which proposed a possible biomarker for CFS. The word is that they too may be about to release several eye-opening papers. Dr. Francis Collins, the head of the whole NIH, will pop up again in a brief talk from 2:30-2:40 EST - one hopes he will use this opportunity to report about more funding for ME/CFS?

The next hour will be particularly interesting as Dr. Light will report on her fascinating exercise/receptor upregulation studies and Dr. Baraniuk, will report on his followup spinal fluid brain proteome study, which we have heard was successful. A validation of the earlier study which suggested that amyloidic proteins may be causing small tears in the blood vessels of the brain - would be a big step forward - particularly after the successful Schutzer spinal fluid protein study of a month or so ago.

It only gets better when we look at exercise and muscle functioning and energy production fro Dr. Kent-Braun and Dr. Snell in the next session. (See the recent overview of 2010 exercise research below).



Day II

Biomarkers, biomarkers, biomarkers - Biomarkers are like the holy grail in CFS....finding biomarkers in a subset of CFS patients would be a huge step forward and starting off Day II we have talks on two potential biomarkers; immune biomarkers in the blood by Dr. Klimas and neuroimaging biomarkers in the brain plus we'll get a take on the genetics of complex diseases.

The Treatment section will not involve Dr. Montoya and his study unfortunately but Dr. Friedberg will talk on 'self-management' - always an important category when so few other viable options exist (and many people can't get to ME/CFS doctors) - and then Dr. Bateman will delve into a fuller appraisal of the treatment options for ME/CFS.

Then there will be several talks on communication. Kim McCleary will talk on communicating with Research Stakeholders - which may refer to funding agencies (??), Ken Friedman will talk on roadblocks that have thwarted CFS researchers from getting funding, Pat Fero will talk about three generation of CFS patients and Mary Schweitzer will talk about the Internet and Communication.

Summaries will be given for each session (hopefully brief ones), the DHHS will speak on something - its not clear what but since they hold all the money, it could be interesting.... and then there will be a full Q&A session - perhaps the most interesting part of the Workshop and then that will be it.

Webcast of the State of Knowledge Workshop; http://videocast.nih.gov/summary.asp?live=10098



Research Overviews

Some research overviews were done to get to speed on where we're at. Check them out below.

2010 The Year in ME/CFS Research - takes a broad look at how many studies were done in 2010 and what topics they were on
2010 ME/CFS Research Pt II: The Exercise Studies - looks at some the really interesting research exploring why people with ME/CFS have such a poor response to exercise
2010 ME/CFS Research Pt. III: Immune and Pathogen Research - finds progress made on validating the presence of pathogens in ME/CFS and some intriguing immune studies.
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Bericht door poppetje »

Even over het tijdsverschil. Ik zie net dat het nu 4.13 AM (in de nacht) is in Bethesda waar het congres is. Dat betekent dus 6 uur tijdverschil.

Congres start om 8.00 uur AM locale tijd, dus vanaf 2 uur vanmiddag hier in Nederland kan je de webcast gaan kijken.
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En we zijn live ......

http://videocast.nih.gov/
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perfecte verbinding, geluid en beeld, dus wie geinteresseerd is, kijk vooral mee !
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poppetje
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Bericht door poppetje »

Voor wie op twitter mee wil lezen. Live verslag door http://twitter.com/VerloreneZeit en http://twitter.com/EsMECVS
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Bericht door poppetje »

je kunt mij ook volgen, www.twitter.com/mecvsnieuws
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Bericht door poppetje »

Mikovits en XMRV up next 16.30 uur !

http://videocast.nih.gov/
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Bericht door poppetje »

Verhitte discussie over XMRV tussen mikovits en coffin op youtube
(Coffin: suggest leaving XMRV as we know it behind !)

http://www.youtube.com/watch?v=Dktu4RR5 ... ture=share
emootje
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Zit lekker met een zak chips achter de buis. Top entertainment die NIH workshop! Dank u Poppetje.
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Esther
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Die Coffin is me toch ook een pummel eerste klas. Wil heel de XMRV onderuit halen, maar vertikt het om te spreken over de proteines en de antilichamen. Met zijn kinderachtige cartoon van muizen en poppetjes. Gelukkig heeft Nancy Klimas hem de juiste vragen gesteld, waarop hij stamelend het antwoord schuldig moest blijven. Leave XMRV behind us... Ik dacht het niet John [-(

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