ME/CFS Primer/Education Newsletters Volume 6, Issue 3 • December 2013

Volume 6, Issue 3 • December 2013

December 1, 2013
 

IACFS/ME Newsletter

Volume 6, Issue 3 • December 2013

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


 

CONTENTS

President’s Letter
Welcome Message from Ros Vallings, newsletter editor

History
Board Activities
Board Nominations Requested
Research News
Other News
Awards and Grants

Conference Information
Book Review

 




IACFS/ME President’s Letter

 

Dear Members,

I hope your holiday season is off to a good start!

An interesting and diverse multidisciplinary program is nearing completion for our 11th biennial international research and clinical conference to be held in San Francisco, March 20-23, 2014.  The conference is co-supported by Stanford University and will be held at the Parc 55 Wyndham Hotel, conveniently located in the Downtown area. The special discounted room rate is $199/night. Our call for late breaking poster abstracts is now underway (www.iacfsme.org).  And early bird registration for the conference is now open (www.iacfsme.org).

We have very exciting news!  Dr. Ian Lipkin, called the “master virus hunter” by The New York Times will be our special guest speaker on March 20, 2014, the opening talk of the four day meeting. Dr. Lipkin is a professor of epidemiology and neurology and director of the Center for Infection and Immunity at Columbia University. He and his team have discovered or characterized more than 500 infectious agents including Borna disease virus and West Nile virus. He also led the definitive scientific study that found no link between CFS/ME and the XMRV retrovirus. Dr. Lipkin was the first to use purely molecular methods to identify infectious agents, assisted the WHO and the Peoples’ Republic of China during the 2003 SARS outbreak, and pioneered the use of high throughput sequencing in pathogen discovery.

And we have more pre-eminent speakers on our agenda!  Our keynote is physician-author Abraham Verghese, Professor for the Theory and Practice of Medicine at Stanford University Medical School. Few people combine a career as physician, professor and author as well as Abraham Verghese, who has been on The New York Times bestseller list with all three of his books, including his most recent work, Cutting for Stone.  In 2011, he was elected to be a member of the Institute of Medicine.  Today, in his writing and his work, he continues to emphasize the importance of bedside medicine and physical examination in a time when advanced technology frequently results in the patient having less attention than the patient data in the computer.

Our plenary speaker will be Noel R. Rose, MD, PhD, Director of the Center for Autoimmune Disease Research and a Professor in the Department of Pathology (with joint appointment in the Department of Medicine) at Johns Hopkins University School of Medicine. He is also a Professor in the W. Henry Feinstone Department of Molecular Microbiology and Immunology at  the Johns Hopkins University Bloomberg School of Public health. Dr. Rose’s pioneering studies on autoimmune thyroiditis and myocarditis helped to initiate the modern era of research on autoimmune disease.  He will address the issue of fatigue and autoimmune disease.

Attend a Unique International Conference:
The First to Focus on Fatigue in Illness and Health

We expect our 2014 research and clinical conference to be unique, innovative and exciting -- given its broadened focus on fatigue in illness and health. I have already learned through publication of our new fatigue journal how the challenges of studying CFS/ME can be informed and advanced by important research in related fields that we may be less familiar with.

Institute of Medicine: New CFS/ME Case Definition Panel Formed

The new IOM CFS/ME definition committee has been nominated—which includes our own board member, Lily Chu. The committee is composed of experts from within and outside of the field in a 50/50 mix. In keeping with our focus on scientific advocacy, we hope that the committee will base their recommendations on data and empirical studies. In the last few years, fine-grained examinations of existing case definitions as well as reporting on actual symptom frequencies in CFS/ME provide a reasonable foundation to inform a case definition.  As an independent scientific organization, the IOM’s distinguished reputation is based on impartially weighing the evidence and forging an expert consensus on often controversial biomedical conditions. If this process is applied to new (and existing) case definitions, then IOM’s recommendations hold the promise of advancing the field and increasing legitimization.

We hope to see you in San Francisco!

With best regards,

Fred
Fred Friedberg, PhD
President
IACFS/ME

www.iacfsme.org
 




Message from Ros Vallings, newsletter editor

 

 

Welcome to the December 2013 edition of the IACFS/ME newsletter.

 

Since our last newsletter the impetus builds up towards the IACFS/ME conference in March (details below). I have just returned from two days on the Gold Coast in Australia, where I attended the opening of the National Centre for Neuroimmune Diseases and Research symposium.  This was a wonderful event (sponsored by the Alison Hunter Memorial Foundation).  Sonya Marshall-Gradisnik is to be congratulated on all the effort involved in establishing this facility, encompassing research laboratories, a medical clinic and inpatient beds. (http://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases/our-team). The symposium was attended by 30 international researchers and clinicians, and it was an excellent opportunity for establishing collaborative research, and we all learnt much from each other. See http://www.griffith.edu.au/__data/assets/pdf_file/0009/566118/CFS-Symposium-2013-Program.pdf for programme, abstracts and attendees. And I have written up the proceedings (Attachment 1).  
 


History
 
As always I like to offer a small insight into a little bit of history, and I always welcome snippets from other people if you come across anything of interest. Research and understanding of CFS/ME has moved so fast recently, that this quote from Einstein seems very appropriate: A student asked why the questions in this year’s examinations were the same as last year – Einsteins’s reply: “Because the answers will be different” – I think this truly reflects what has been happening in our field. 
 


Board Activities
 

This has been a very busy few months for the board as we move towards finalisation of the programme of events for the forthcoming conference in March. We have received a large number of abstracts for oral presentations and posters. All in all it has the makings of a very exciting conference. As well as formal presentations of papers and posters, there will be a number of workshops and opportunities for smaller meetings, all rounded off with a wonderful banquet, at which the biennial awards will be presented for outstanding work in the field. San Francisco will be a great city to visit, and local board members tell us to expect wonderful food and no shortage of “extra-curricular” activities.
Late breaking abstracts for poster presentations can be accepted until 15th Jan 2014. See
http://www.iacfsme.org/Conferences/2014LateBreakingAbstracts/tabid/541/Default.aspx for instructions.  
Donations and sponsorship are welcome. See our website for details.
Don't forget to take a look at our Conference Supporter Brochure for opportunities to donate funds to the Conference, advertise your practice/ services/ products, and/or honor a fellow clinician/ scientist!  For US residents, donations are tax-deductible. See
http://www.iacfsme.org/LinkClick.aspx?fileticket=EMAFTWRl%2fzQ%3d&tabid=36

The Practitioner’s Primer has been well received and already work has been done by a small authoring sub-committee to move towards the next revision. A meeting is planned for early in the New Year to finalise this, and the revised edition should be available for sale and distribution at the conference.

Board members Fred Friedberg and Ken Friedman will shortly be attending the next webinar CFS Advisory Committee meeting (now held twice a year) on Dec. 10 – 11 in Washington, DC. Fred will use this opportunity to promote our conference.

Fred continues to edit the Journal, Fatigue: Biomedicine, Health and Behaviour – issued 4 times a year – and welcomes papers for consideration. The latest issue (October 2013) has some interesting high quality articles. Online access for previous issues is available through our website. Journal login for IACFS/ME members:
http://www.iacfsme.org/Journal/tabid/525/ctl/Login/Default.aspx?returnurl=%2fJournal%2ftabid%2f525%2fDefault.aspx



Board Nominations Requested

We have had nominations for new board members, and voting will take place at the business meeting during the conference.  Please contact us through our website if you have further nominations for the board. We continue to welcome interested members to volunteer for a committee or Board member position. Areas we need help in include fundraising, public relations/ communication (especially in regards to outreach to other scientific/ medical organizations), and website content/design but we will also work with potential volunteers to tailor a position that matches their interests and degree of availability.



Research News

A number of papers have been published since our last newsletter (Attachment 2). There are 37 abstracts from 16 countries. It is exciting to see publications from China, Taiwan and Turkey.

Also see the following websites for lists of recently published papers by specific institutions:

http://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases/publications-and-conferences

http://www.meresearch.org.uk/our-research/completed-studies/abnormal-visual-attention/

The ME Research has also recently published their latest Breakthrough Journal, which updates their research
http://www.meresearch.org.uk/information/breakthrough-magazine/

At the Griffith symposium, Prof Hugh Perry from the UK explained the workings of the Medical Research Council, and outlined the recent initiative to observe CFS/ME research. The UK CFS/ME Collaborative was established and launched in April 2013, bringing together funders and ME charities. An interesting summary of their October meeting is available.
http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/
This is a very important step for the British ME Association. CMRC will be holding their first research conference in October 2014 (see below)



Other News

The Institute of Medicine (USA) announced it will be looking at the diagnostic criteria for ME/CFS (Attachment 3). This initially caused some despair and controversy among researchers, clinicians and patients. Letters have been sent to appropriate organisations and powerful people to stop this. It was felt that already there is a confusing plethora of definitions/criteria – and do we need more? However a committee has now been set up of high profile medical people including some of our own membership of well-known ME/CFS clinicians and researchers (including board member Lily Chu) and we are now hopeful that the outcome and final resolution of this issue will be good. For a list of committee members see: http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49592.



Awards and Grants

Two important announcements earlier this year are included here, as we were not aware of them at the time of release.  $2 million CFS research grant was awarded from the NIH to Dr. Dikoma Shungu & Team (Weill Cornell Medical College).  And the UK Association of Young People with ME (AYME) was awarded the Queen’s diamond jubilee volunteering award. (Attachment 4
 

 

As I write this, it is summer here in New Zealand, which for us means Christmas is fast approaching.  I hope you will all have a very happy time. Best wishes to you all.  We look forward to seeing you in San Francisco in March. 

Ros
Rosamund Vallings, MB BS

Further correspondence can be addressed to me at Vallings@xtra.co.nz. and we welcome contributions, letters, comments, etc.





Conference Information

The 11th IACFS/ME Biennial International Research and Clinical Conference
co-sponsored by Stanford University
Translating Science into Clinical Care

We are happy to announce that registration is now open for our 11th Biennial International Research and Clinical Conference to be held in San Francisco, California, USA, March 20-23, 2014. The conference is co-sponsored by Stanford University and will be held at the Parc 55 Wyndham Hotel.
 
For more information on the conference and registration:  

http://www.iacfsme.org/Conferences/2014Conference/2014ConferenceRegistration/tabid/533/Default.aspx
For hotel information:
http://www.iacfsme.org/Conferences/2014Conference/2014Hotel/tabid/538/Default.aspx
 
Keynote speaker:  Abraham Verghese, MD, Professor of Medicine, Stanford University and best-selling author of Cutting for Stone. 
Plenary speaker:  Noel R. Rose, MD, PhD, Director, Center for Autoimmune Disease Research, Johns Hopkins University School of Medicine.

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Stanford University’s ME/CFS Initiative
    •    will be holding a conference on campus in Palo Alto, California March 19, 2014 focusing on ME/CFS related clinical and research activities occurring at Stanford University

Stanford University Department of Infectious Disease will present the  symposium ”Advances in Clinical Care and Translational Research” on March 19th  2014 at  the Li Ka Shing Center for Learning and Knowledge,  Stanford, Palo Alto, California.  The conference will occur one day before the IACFS/ME Conference (March 20-23, 2014) in San Francisco and is targeted primarily at clinicians and researchers.

“Chronic Fatigue Syndrome is arguably the greatest medical and scientific challenge of our time.”                                          ~Jose G. Montoya, MD

The symposium is sponsored by the Stanford University School of Medicine. Additional information and full programme will follow. For more information about the symposium, please contact Yolanda Cervantes Stanford Center for Continuing Medical Education CME Conference Coordinator.   ycervantes@stanfordmed.org


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9th Invest in ME
International ME Conference 2014

30th May 2014 London
The 9th Invest in ME International ME conference in London on 30th May will again allow a platform for the latest initiatives occurring in biomedical research into ME from different continents - and builds on the positive and successful IIMEC8 Mainstreaming ME Research conference of 2013.
A separate website for the conference will soon be set up and will be updated as the conference plans progress.

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1ST UK CMRC Research conference – Bristol
1-2 September, 2014
Details to be announced


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“Exercise and ME/CFS – the evidence”
Watershed – Bristol – 6.30pm – Feb 5th 2014.
Tickets are now available here. Flier available here.
The ‘Exercise and ME/CFS’ evening with Prof Mark VanNess at Bristol’s Watershed follows the day after his visit to Belfast to address MPs at Stormont. He  will explain surprising evidence relating to exercise in people with ME or CFS, from research he undertook with Staci Stevens and Chris Snell at the Workwell Foundation in California (& the Pacific Fatigue Lab).

This event will be of great interest to many people: healthcare professionals such as GPs, occupational therapists, physiotherapists, social workers and others working with CFS and ME patients, patients, their carers and families, and also medical  researchers.
 




Book Review

BREATHE TO SUCCEED
Tania Clifton-Smith
Penguin Books
Revised edition 2004

 

Tania is a physiotherapist who jointly runs a clinic in Auckland, NZ called Breathing Works. They have helped many patients with ME/CFS who have had disordered breathing patterns. This book provides useful guidelines for a self-help approach and a thorough understanding of how abnormal breathing can have adverse effects on health. The following paragraph is part of an introduction to the book:

Good breathing can alleviate many conditions such as asthma, allergies, chronic airways disease, high blood pressure, fatigue, panic attacks and pain. Many people have developed poor breathing habits without understanding the long term effect on well being. 
This book will show the reader how to achieve better health and wellbeing, naturally, by changing breathing patterns.  

 


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