ME/CFS Primer/Education Newsletters Volume 2, Issue 4 • April 2009

Volume 2, Issue 4 • April 2009

April 1, 2009
 

IACFS/ME Newsletter

Volume 2, Issue 4 • April 2009

Editor
Rosamund Vallings, MNZM, MB, BS
New Zealand ME/CFS Association


Alert: Public meeting at CDC in Atlanta, April 27th, regarding their 5-year strategic plan
for CFS research.

http://www.cdc.gov/cfs/meetings/2009_04.htm


CONTENTS
IACFS/ME position statement: CDC 5-year research plan
President’s Letter
Welcome Message from Ros Vallings, newsletter editor
Book Review
Reno Conference Summary



Draft IACFS/ME position statement on the CDC 5-year research plan

Dear CDC:

--More notice, say 60 days, for this important public meeting would have been desirable.
With sufficient time, a considered statement about research needs could have been developed.

--We would also have preferred to review in advance a draft version of the CDC 5-year plan.
This would have been a reasonable basis for comment and feedback.

--We request a timeline for release and implementation of the CDC 5-year plan. Also, prior to implementation, we would like an opportunity to present formal feedback on the science and goals of the plan.

--To broaden possibilities for innovative research in the challenging and difficult area of CFS, we ask the CDC to consider opening up their funding opportunities to external investigators.

Thank you,

Fred Friedberg, PhD
President
IACFS/ME




IACFS/ME President’s Letter

The Reno Conference, and more

To the IACFS/ME community:

I would like to thank everyone who attended the IACFS/ME conference in Reno, Nevada.

We are happy to report on another productive and successful conference. It featured renowned speakers and researchers from all over the world. There were 403 attendees from 17 different countries. 

Thorough conference planning resulted in a well-run meeting with plenty of opportunities for networking. It is always a great experience to reconnect and exchange information and ideas on research, diagnosis and treatment, to meet old friends and make new ones. It provides a valuable source of education and information for medical and healthcare professionals, scientists and the patient community.  

The conference featured the latest advances in biomedical research in ME/CFS and fatiguing illness more generally, and offered 4 new professional workshops with an impressive enrollment of 150.

Changes in Board of Directors 
We thank Dr. Nancy Klimas, who is stepping down as president of the IACFS/ME after four years, 
for her service. She will remain on the Board through the end of 2009. Dr. Lenny Jason has also stepped down from the Board, due to his increased commitments to research and many other activities. On behalf of the organization, I would like to acknowledge his many significant contributions to IACFS/ME over the last decade. (Lenny will remain on the journal committee.)  Also, Drs. Cindy Bateman, Birgitta Evengard, and Hirohiko Kuratsune are cycling off the Board.  We acknowledge their service to the organization.   

We would also like to announce our 5 new Board members: Jonathan Kerr, MD, PhD (UK), Teruhisa Miike, MD, PhD (Japan), Staci Stevens, MA (US), Rosamund Vallings, MD (New Zealand), and Suzanne Vernon, PhD (US).  These distinguished professionals all have long track records of research productivity and/or clinical expertise.  All have indicated a commitment to strengthening the organization through fundraising, increasing membership, and fostering international collaborations.

Some other new and exciting developments:  

Research Fund/Donor Reception
We have now established a new $1 million IACFS/ME research fund.  A well-attended Donor Reception for the Fund sponsored by the Whittemore-Peterson Institute was held at the Nevada Museum of Art.  We would like to thank Annette Whittemore for her generous support of the reception and her sponsorship of our conference keynote speaker, Governor John Kitzhaber.

Peer Review Journal in Progress
This is a new initiative to evolve the quarterly newsletter, the Bulletin of IACFS/ME, into a Medline peer review journal. We are in contact with a potential publisher and encourage submissions for our next issue in June, 2009.  Please contact Dr. Gudrun Lange (Gudrun.Lange@va.gov).

Future Conferences
We are talking to potential sponsors worldwide about presenting mini-conferences for professionals and patients in the next year.  

Our next major conference location will be based on sponsorship from interested individuals and organizations.  I encourage anyone who may be interested in having the IACFS/ME conference in their city to contact me (fred.friedberg@stonybrook.edu).

Thanks to all who made the conference a success and for your continued support.

Best wishes,
Fred

Fred Friedberg, PhD
President
IACFS/ME




Message from Ros Vallings, newsletter editor

Welcome!

 As you will see, the IACFS/ME now has a new board and we welcome Fred Friedberg as our President.  As a new member, I feel we are fortunate in having such experienced leaders.  The 2009 conference in Reno was well attended and was a great success, thanks to a wonderful organizing committee and a large number of high quality oral and poster presentations from all around the world.  The conference summary can be viewed on the website:  www.iacfsme.org

The new board has been assigned a number of tasks, one of which is to increase our membership and encourage more international members.  To this end Ken Friedman is forming a team of international ambassadors to promote our organization worldwide. If you are interested in representing your country, please contact Ken (friedman@umdnj.edu).  It is hoped that many of you will also contribute snippets to this newsletter about what is happening in your part of the world.  We are interested in knowing about research, clinical and political matters.  We would also like to hear about any new publications such as books and journal articles on CFS/ME and related conditions.  The newsletter is published 3 times a year, and I would appreciate items of interest for the next newsletter (August) as soon as possible.  To start things off, I have reviewed a very useful recent book published in New Zealand – “Breathing Matters”, By Dr Jim Bartley.
Gudrun Lange is now the Editor of The IACFS/ME Bulletin which is evolving into peer review journal. We invite you to send in abstracts for consideration (langegu@umdnj.edu) for the next issue (May). I look forward to hearing from many of you in the months ahead.

Sincerely,

Rosamund Vallings




Book Review

Breathing Matters – a NZ guide 
By Jim Bartley, FRACS
Random House, New Zealand 


Dr Jim Bartley is a well respected Auckland Ear, Nose and Throat specialist, who is also closely involved with the Auckland Regional Pain Service.  His interests include general ENT problems, particularly with associated abnormal breathing, pain management and temporo-mandibular-joint disorders.

His book is based on his sound common-sense approach to the many symptoms and difficulties that arise from poor breathing patterns.  Breathing well helps a person relax, normalizes body biochemistry, reduces muscle pain and helps a person achieve normal posture and movement.  The association between Chronic Fatigue Syndrome, Fibromyalgia and Hyperventilation Syndrome has long been recognized, and Jim’s book addresses these issues, and provides excellent advice regarding management.  Recommendations for improved breathing techniques are included.

This book is suitable for professional health providers and patients alike, and is well referenced and researched.  It is easily readable and inexpensive.  I would strongly recommend this book to all those who have CFS/ME and related disorders. 
 

—Ros Vallings

 



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