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2010 Webinar Series
The CFIDS Association of America hosts a series of seminars broadcast over the web, “webinars,” on topics of high interest to people with CFS, loved ones and health care professionals. Each of these programs features top experts and will be available to the public. The only charge to participate may be the cost of your phone call* to listen to the program.
We make every effort to archive programs on our website for later viewing; listed below are links to the recordings of and slide presentations for past programs.
PAST PROGRAMS
Update of Blood XMRV Working Group Activities
Speakers: Graham Simmons, PhD, Michael Busch, MD, PhD and
Steven H. Kleinman, BSc, MD
Spirituality and Health
Speakers: Gail H. Ironson
Minimizing Relapses: Pacing Yourself Through the Holidays
Speakers: Dr. Bruce Campbell and Dr. Dane B. Cook
“DOC TALK:” Communicating With Your Health Care Team About CFS
Speaker: Dr. Lucinda Bateman
Comorbid Conditions: The Alphabet Soup Of CFS
Speaker: Dr. Morris Papernik
Expanding Research: Building On Your Investment
Speakers: Suzanne Vernon, PhD, Kathy Light, PhD, Alan Light, PhD, Gordon Broderick, PhD and Dikoma Shungu, PhD
CFS & The Viral Connection
Speaker: Anthony Komoroff, M.D.
Managing Orthostatic Intolerance
Speaker: Peter Rowe, M.D.
The Nuts and Bolts of Disability Insurance
Speaker: Charles McB. (“Mac”) Sasser, JD
XMRV & Blood Safety
Speaker: Louis M. Katz, MD
XMRV Update
Speakers: Vincent Racaniello, PhD and Lucinda Bateman, MD
The Association’s Accelerate Research Program: Three (More) Studies
Speaker: Suzanne D. Vernon, PhD
The SolveCFS BioBank
Speakers: Suzanne D. Vernon, PhD and Liz Horn, PhD, MBI
Treating CFS & FM: The Stepwise Approach
Speaker: Charles W. Lapp, M.D.
Chronic Pain Conditions & the Overlapping Conditions Alliance
Speakers: Kim McCleary, Mary Lou Ballweg, Terrie Cowley and Christin Veasley
CFIDS Association Research Program update: Part 2
Speaker: Dr. Suzanne D. Vernon
"Defining CFS: Diagnostic Criteria and Case Definitions"
Speaker: Dr. Leonard Jason of DePaul University
Going With the Flow – Blood Flow, That Is
Speaker: Marvin Medow, PhD, New York Medical College
Association Research Program Update
Speaker: Suzanne D. Vernon, PhD, Scientific Director
XMRV: Implications for CFS (January 2010)
Speaker: Lucinda Bateman, M.D., Fatigue Consultation Clinic
UPCOMING PROGRAMS
Update of Blood XMRV Working Group Activities
Speaker:Graham Simmons, PhD, Michael Busch, MD, PhD, and Steven H. Kleinman, BSc, MD
Date: December 17, 2010
Recording of Presentation:
http://www.youtube.com/watch?v=0HynlkG0cVc
Slides of Presentation:
http://www.cfids.org/webinar/slides-121710.pdf
The Department of Health and Human Services Blood XMRV Scientific Research Working Group (SRWG) was established in late 2009 to design and coordinate research studies to evaluate whether XMRV poses a threat to blood safety. It is presently overseeing a four-phase study with the following objectives:
- Phase I: Evaluating the analytical sensitivity of multiple XMRV nucleic acid assays
- Phase II: Pilot clinical studies to evaluate optimal processing time and sample preparation
- Phase III: Evaluating clinical sensitivity and specificity of XMRV nucleic acid and antibody assays
- Phase IV: Initial estimation of the proportion of blood donors who are positive for XMRV nucleic acids and/or antibodies.
Results of the Phase I (analytical panels) were presented on July 27, 2010 at a meeting of the FDA's Blood Products Advisory Committee (BPAC). Results of Phase II (pilot clinical studies) were presented to BPAC on Dec. 14, 2010.
In this webinar, Graham Simmons, PhD, and Michael Busch, MD, PhD, of Blood Systems Research Institute and University of California-San Francisco provide an update on the Blood XMRV Scientific Research Working Group studies, including results from Phases IIa and IIb, as well as future retrospective repository and prospective screening studies of XMRV in US blood donors and recipients. Steven H. Kleinman, BSc, MD, of University of British Columbia, and a member of the SRWG, serves as moderator for the discussion. The panel explains the findings, shares a timeline for past steps and addresses questions submitted by registrants.
There was a technical problem with the recording and the program begins near the end of Dr. Simmons’ presentation. We will post a separate recording of Dr. Simmons entire presentation as soon as it can be recorded.
Spirituality and Health
Speaker: Dr. Gail Ironson
Date: December 2, 2010
Recording of Presentation:
http://www.youtube.com/watch?v=CsuI8ZCA7mc
Slides of Presentation:
http://www.cfids.org/webinar/slides-120210.pdf
Dr. Ironson closed this interactive webinar with a presentation of specific beliefs and practices that may have been helpful to those suffering from chronic illness, including guiding participants through some exercises during the webinar itself.
Dr. Ironson discussed what spirituality is and how it’s measured. She reviewed the current scientific findings on spirituality, religion and health; and shared ways in which spirituality can help one cope with everyday stressors.
Minimizing Relapses: Pacing Yourself Through the Holidays
Speakers: Dr. Bruce Campbell and Dr. Dane B. Cook
Date: November 18, 2010
Recording of Presentation:
http://www.youtube.com/watch?v=bE4xGCw_3Ng
Slides of Presentation:
http://www.cfids.org/webinar/slides-111810.pdf
Dr. Campbell’s slides with notes:
http://www.cfids.org/webinar/slides-notes-111810.pdf
Periods of intense symptoms (often called relapses, setbacks or flares) are a common and often demoralizing part of CFS. Besides creating additional pain and discomfort, they undermine efforts to gain control. Pacing offers an alternative. Matching activity to energy can reduce suffering, bring stability to life and minimize relapses. Dr. Bruce Campbell, executive director and founder of the CFIDS & Fibromyalgia Self-Help program, gave an overview of pacing, focusing on understanding limits and learning pacing strategies. He also described practical ways to use pacing to enjoy the holidays and other special events.
Dr. Dane B. Cook, assistant professor at the University of Wisconsin-Madison School of Kinesiology, discussed the research on acute exercise in CFS from an exercise physiology perspective and from a patient perspective. He reviewed the research on physiological responses during exercise followed by physiological and symptom responses post-exercise (i.e., post-exertional malaise). Dr. Cook also outlined the differences between acute and chronic exercise responses in the studies that have examined exercise training in CFS.
“DOC TALK:” Communicating With Your Health Care Team About CFS
Speaker: Dr. Lucinda Bateman
Date: November 11, 2010
Recording of Presentation:
http://www.youtube.com/solvecfs#p/a/u/0/E3y5hxJjj6s
Slides of Presentation:
http://www.cfids.org/webinar/slides-111110.pdf
Pain Diagrams:
http://www.cfids.org/webinar/pain-diagrams.pdf
What can people with CFS (PWCs) do to strengthen their relationships with their doctors and other health care providers? Effective communication is the key. Dr. Lucinda Bateman, founder of The Fatigue Consultation Clinic in Salt Lake City, Utah, presented some strategies to enhance communication with your medical team and avoid leaving the doctor’s office feeling frustrated and depressed.
Comorbid Conditions: The Alphabet Soup Of CFS
Speaker: Dr. Morris Papernick
Date: October 21, 2010
Recording of Presentation:
http://www.youtube.com/watch?v=Cz6A0lE6kHM
Slides of Presentation:
http://www.cfids.org/webinar/slides-102110.pdf
Internist Dr. Morris Papernik of ProHealth Physicians Group and Hartford Hospital in Hartford, Conn., discussed CFS’s comorbid conditions, or those illnesses or disorders that are present in addition to a primary disease or disorder. Unfortunately, people with CFS often suffer from more than CFS alone. Dr. Papernik will shared information about the most common comorbid conditions found in CFS patients, together with tips for dealing with multiple disorders.
Expanding Research: Building On Your Investment
Speakers: Suzanne Vernon, PhD, Kathy Light, PhD, Alan Light, PhD, Gordon Broderick, PhD and Dikoma Shungu, PhD
Date: October 5, 2010
Recording of presentation:
http://www.youtube.com/watch?v=RMurW2LIwjs
Slides of presentation:
http://www.cfids.org/webinar/slides-100510.pdf
When the CFIDS Association of America launched the Campaign to Accelerate CFS Research, a year-long, $1-million initiative to expand its research program in 2008, proposals were judged for both scientific merit and strategic merit. With three of the researchers funded by the Association, Scientific Director Dr. Suzanne Vernon discussed how the Association’s research program has helped secure additional funding and accelerated uncovering promising discoveries for the field. Learn more about how pilot funding helps researchers secure larger grants, making the investment of dollars in it one of the most important ones people with CFS and those who careabout them can make.
CFS & The Viral Connection
Speaker:Anthony Komoroff, M.D.
Date: September 16, 2010
Recording of presentation:
http://www.youtube.com/solvecfs#p/a/u/0/hyWSNitU-PQ
Slides of presentation:
http://www.cfids.org/webinar/slides-091610.pdf
CFS researcher and clinician Dr. Anthony Komaroff of Harvard Medical School and Brigham and Women's Hospital explored some of the infectious agents and illnesses connected to CFS, including Epstein-Barr Virus (EBV), Human Herpesvirus (HHV)-6, Q-fever, Ross River virus, Lyme Disease, Parvovirus, Borna disease virus, Influenza A (H1N1) virus (swine flu), retroviruses, enteroviruses and mycoplasmas.
Managing Orthostatic Intolerance
Speaker: Peter Rowe, M.D.
Date: September 1, 2010
Recording of presentation:
http://www.youtube.com/watch?v=5iF30TVLaRE
Slides of presentation:
http://www.cfids.org/webinar/slides-090110.pdf
Clinical written material:
http://www.cfids.org/webinar/cfsinfo2010.pdf
Dr. Peter Rowe was the first person to establish a substantial overlap between OI and CFS (although not everyone with OI suffers from CFS, and not everyone with CFS experiences OI). Dr. Rowe shared with us an informative presentation that details the various forms of OI, explores the condition’s relationship to CFS and offers tips and tricks to manage Orthostatic Intolerance.
The Nuts and Bolts of Disability Insurance
Speaker: Charles McB. (“Mac”) Sasser
Date: August 19, 2010
Recording of presentation:
http://www.youtube.com/solvecfs
Charles McB. (“Mac”) Sasser, JD, opened his tool chest to share the nuts and bolts of disability insurance. He covered the different types of insurance, including employer-provided disability insurance (governed by ERISA), private insurance for disability and Social Security disability insurance; review the SSA’s CFS ruling; and describe how to navigate the process of obtaining coverage.
XMRV & Blood Safety
Speaker: Louis M. Katz, MD
Date: August 16, 2010
Recording of the presentation: http://www.youtube.com/solvecfs#p/a/u/0/ex6iS_2RqiY
Slides of the presentation: http://www.cfids.org/webinar/081610-slides.pdf
In this webinar, Louis M. Katz, MD, a specialist in infectious diseases and a prominent figure in national blood banking organizations, provided background about blood safety issues related to xenotropic murine leukemia virus-related virus (XMRV) – a retrovirus that has been linked to chronic fatigue syndrome (CFS). Public health officials are investigating the potential threat to the nation’s blood supply posed by XMRV due to the possibility that it might be transmitted through transfusions, as are other retroviruses such as HIV and HTLV. Dr. Katz reviewed current XMRV research initiatives and will discuss investigations of the retrovirus by those working in transfusion medicine.
Louis M. Katz, MD has served as President of the Board of Directors of America’s Blood Centers, the national organization of independent, community-based blood centers that supply half of the blood components transfused in the United States. He received his medical degree from the University of Iowa College of Medicine and is board certified in internal medicine and infectious diseases. Dr. Katz is a member and chair of the Transfusion Transmitted Diseases Committee and is a member and past chairman of the FDA Blood Products Advisory Committee.
XMRV Update
Speakers: Vincent Racaniello, PhD and
Lucinda Bateman, MD
Date: July 15, 2010
Recording of the presentation:
http://www.youtube.com/solvecfs#p/a/u/0/qBfLqeGuzuo
Slides of the presentation:
http://www.cfids.org/webinar/071510-slides.pdf
During this program you heard from two experts about the latest research into the association between XMRV, a newly discovered human retrovirus, and CFS.
Vincent Racaniello, PhD, a virology professor at Columbia University and host of the popular "This Week in Virology" podcast and Virology Blog, updated us on what is known about XMRV, its association with human disease (including CFS) and how research should move forward to understand its role in CFS.
Lucinda Bateman, MD, an expert CFS physician, provided an update on the latest studies of XMRV and CFS, as well as research under way. Dr. Bateman is a clinical collaborator on a study at University of Utah led by Dr. Ila Signh, one of the co-discoverers of XMRV.
The Association’s Accelerate Research Program:
Three (More) Studies
Speaker: Suzanne D. Vernon, PhD
Date: July 8, 2010
Recording of program: http://www.cfids.org/webinar/070810.wmv
(Note: slide presentation begins around the 5 minute mark of the recording)
Slides of the program: http://www.cfids.org/webinar/slides-070810.pdf
In 2008, the CFIDS Association of America greatly expanded its research program and launched several new initiatives. Suzanne D. Vernon, PhD, scientific director of the CFIDS Association of America, described the final three of the six research projects the Association funds directly.
The three researcher's projects that Dr. Vernon described in this webinar were Dr. Kathy Light of the University of Utah, Dr. Dikoma Shungu, of Weill Medical College, Cornell University and Dr. Marvin Medow, associate professor at New York Medical College.
The SolveCFS BioBank
Speakers: Suzanne Vernon, PhD and Liz Horn, PhD, MBI
Date: June 9, 2010
Recording of program: http://www.youtube.com/solvecfs
Slides of the program: http://www.cfids.org/webinar/slides-060810.pdf
Learn more about the CFIDS Association's most recent -- and most ambitious -- research project, the SolveCFS BioBank. Association scientific director Suzanne Vernon, PhD and Liz Horn, PhD, MBI, director of the Genetic Alliance BioBank shared information and discussed the ways in which this biorepository enables patients to participate directly in cutting-edge research.
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Charles W. Lapp, M.D. |
Treating CFS & FM: The Stepwise Approach
Speaker: Charles W. Lapp, M.D.
Date: May 20, 2010
Recording of program: http://www.youtube.com/user/SolveCFS#p/a/u/1/sw5HcimeSOY
Slides from Webinar: http://www.cfids.org/webinar/stepwise-slides.pdf
Slides with notes from Dr. Charles Lapp: http://www.cfids.org/webinar/lapp-slides.pdf
In his practice at the Hunter-Hopkins Center in Charlotte, North Carolina, Dr. W. Charles Lapp utilizes the “Stepwise Approach” to caring for patients with chronic fatigue syndrome and/or fibromyalgia. The Stepwise Approach uses traditional medical therapy complemented by proven wellness techniques to restore well-being and help the sufferer to improve naturally. This is accomplished through education, proper nutrition, low level graded activity, medical management of symptoms, control of perpetuating factors and supportive therapies.
Chronic Pain Conditions & the Overlapping Conditions Alliance
Speakers: Kim McCleary, Mary Lou Ballweg, Terrie Cowley and Christin Veasley
Date: May 5, 2010
Recording of program: http://www.cfids.org/webinar/05052010.wmv
Slides of program: http://www.cfids.org/webinar/oca-slides.pdf
In this webinar organization leaders described four of the conditions that have sidelined as many as 50 million lives and cost up to $80 billion each year. The four conditions to be spotlighted are: chronic fatigue syndrome, endometriosis, temporomandibular (TMJ) disorders and vulvodynia. These four either solely affect women, or target women at least four times more often than men.
Speakers:
- CFS: Kim McCleary, President & CEO of the CFIDS Association of America
- Endometriosis: Mary Lou Ballweg, President & Executive Director of the Endometriosis Association
- TMJ: Terrie Cowley, President of the TMJ Association
- Vulvodynia: Christin Veasley, Associate Director of the National Vulvodynia Association
CFIDS Association Research Program update: Part 2
Speaker: Dr. Suzanne D. Vernon
Date: May 4, 2010
Recording of program: http://www.cfids.org/webinar/05042010.wmv
Slides of program:
http://www.cfids.org/webinar/050410-slides.pdf
In 2008, the CFIDS Association of America greatly expanded its research program and launched several new initiatives. In the second webinar dedicated to describing our accelerated research program, Suzanne D. Vernon, PhD, scientific director of the CFIDS Association of America, will describe three of the six research projects it funds directly.
The three researcher's projects that Dr. Vernon described in this webinar were
Gordon Broderick, PhD, University of Alberta, Sanjay Shukla, PhD, and Bud Mishra, PhD.
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Dr. Leonard Jason |
"Defining CFS: Diagnostic Criteria and Case Definitions"
Speaker: Dr. Leonard Jason of DePaul University
Date: April 14, 2010
Recording of program:
http://www.cfids.org/webinar/defining-cfs041410.wmv
Program slides:
http://www.cfids.org/webinar/jason-slides041410.pdf
In this presentation, Dr. Leonard A. Jason explores whether 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.
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Dr. Marvin Medow |
Going With the Flow – Blood Flow, That Is
Speaker: Marvin Medow, PhD, New York Medical College
Date: March 25, 2010
Recording of program: http://www.cfids.org/webinar/oi-march2010.wmv (introductory remarks did not record properly)
Program slides: http://www.cfids.org/webinar/oi-slides-32510.pdf
Dr. Medow describes his study of abnormal blood flow in patients with CFS and Orthostatic Intolerance and the techniques his team uses to measure blood flow and chemical changes that may explain many of the symptoms experienced by CFS patients. You'll learn more about orthostatic intolerance, tilt table testing, transcranial Doppler and microdialysis.
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Dr. Suzanne Vernon |
Association Research Program Update
Speaker: Suzanne D. Vernon, PhD, Scientific Director
Date: February 18, 2010
Recording of program: Windows Media Player file or on our YouTube channel
Slides: Download PowerPoint file (may take a moment to load)
This 90-minute video recording of a February 18, 2010 webinar features our scientific director, Suzanne D. Vernon, PhD. Dr. Vernon provides an overview of the six research grants currently funded by the CFIDS Association of America.
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Dr. Lucinda Bateman |
XMRV: Implications for CFS
Speaker: Lucinda Bateman, M.D., Fatigue Consultation Clinic
Date: January 15, 2010
Learn More: http://www.cfids.org/webinar/xmrv-presentation-jan2010.asp
Audio file of program: http://www.cfids.org/webinar/xmrv-jan2010.mp3
Dr. Lucinda Bateman, an internist whose practice is dedicated to the management and care of people with CFS and fibromyalgia covered the basics of research linking XMRV (a human retrovirus) and CFS. She shared some early insights into what this discovery might mean for the field and for patients, as well as her perspective on other current research efforts. Unfortunately, a technical problem occurred during the presentation that prevents us from posting an archived version. Dr. Bateman will return on July 15 to give an update on XMRV as part of our webinar series.
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If you’re not familiar with how web conferencing works, please read, “What is a Webinar?” so you know what to expect. This information provides helpful information about the technical equipment required, as well as what to do at the time of the program to join the web conference.
* If you have access to VoIP (voice over internet protocol) or a cell phone with unlimited usage (or with ample minutes in your service plan), there is no cost for audio. Please read our webinar description to learn more.
ACCESS LIST OF UPCOMING PROGRAMS
Last updated on July 15, 2010
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