Volume 5, Issue 1 • April 2012

April 1, 2012

IACFS/ME Newsletter

Volume 5, Issue 1 • April 2012

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


IACFS/ME President’s Letter

Dear Members,

I hope you are all enjoying this transition to much more agreeable weather. (Of course, this may not apply to our Down Under members, such as Ros Vallings, newsletter editor.)
I’d like to announce the upcoming release (probably in May, 2012) of the IACFS/ME Primer for Clinical Practitioners. The primer contains basic information on the assessment, diagnosis and treatment of patients with ME/CFS. Our goal is to disseminate the primer to general practitioners -- particularly general practice physicians who may not be familiar with ME/CFS. Also we would like to make the primer available to government health agencies worldwide including the CDC, NIH, and AHRQ. If you have any ideas on how best to publicize and circulate the primer, please contact me at: [email protected].
A dedicated volunteer committee put together the primer over a two year period via conference calls and individual effort that involved a considerable amount of ongoing review, editing, and spirited debate. The committee consisted of a multidisciplinary ME/CFS-specialized group that included four primary care physicians, two psychologists and a psychiatrist, a physiologist, an exercise physiologist, and a physical therapist. We also solicited outside reviews of the primer from CFS/ME- interested physicians and well-known patient advocates.
As chair of the primer committee, I would like to thank the committee members for their sustained and successful efforts to complete this important project. Committee members are: Rosemary Underhill, Rosamund Vallings, Cindy Bateman, Alan Gurwitt, Charles Lapp, Alison Bested, Ken Friedman, Leonard Jason, Staci Stevens, and Todd Davenport.
It appears that the new primer is also responsive to one of the concerns expressed in our recent online survey of the membership, present and past. Board member Lily Chu conducted the survey with results reported in this newsletter. Offering healthcare provider education was the most endorsed (39%) write-in item in a list of priorities for IACFS/ME. As such, the primer may be an important new authoritative reference to bolster our efforts to educate providers worldwide about ME/CFS.

With best regards,

Fred Friedberg, PhD

Message from Ros Vallings, newsletter editor

Welcome to the April 2012 edition of the IACFS/ME newsletter.

We are already well into 2012 and as I write this at Easter in New Zealand, we are moving into autumn and darker evenings, while many of you will begin to enjoy the promise of spring. Let us hope this spring will be the beginning of yet more exciting phases towards our understanding of CFS/ME and all its complexities. Much research is continuing all around the world and more money is being distributed in large grants – all good news. 

As always it is interesting to focus on a snippet of history, often showing us just how far we have come. Last time I mentioned Sir Richard Manningham-Knight’s1750 treatise on “little febricular”, and I have since received an interesting additional comment below from Hilary Johnson (author of Osler’s Web):
“The little febricula you describe was the late Stephen Straus’ most side-splitting slide that he used in his grand rounds presentations on CFS all over the world. He showed a picture of a woman lying on a fainting couch, then described the little febricula. He always got a big laugh from his audience of mostly doctors, who seemed to find any images of prostrate women funny. When Paul Cheney, MD looked into the historical literature to find out more about the little febricula, he discovered it was of short duration (weeks) and usually ended in death. (Though Straus did not clarify this to his audience, if he knew.)
I haven’t seen the little febricula mentioned in years; thought I would pass this on for your consideration.” 

Meetings, Conferences
There have been no major CFS/ME conferences since Ottawa 2011, but there are several meetings in the pipeline (see below). If you have details of conferences in your region that you would like us to publicise in our newsletter, please let me know. The Open Medicine Institute is organizing its first international brainstorming round-table meeting with a small gathering of specially invited researchers, in June 2012. Dr. Andreas Kogelnik has submitted details for our information (see attachment 1).

IACFS/ME Activities
The board continues to have regular communication via teleconferencing meetings now using Skype. We have focused on funding, future conferences, the Bulletin, and addressing the needs of our members. To this end a survey was undertaken by board member Lily Chu, providing us with extremely useful information for future planning.  She has provided a good summary (see attachment 2).
Fred Friedberg continues to edit and produce the Bulletin and welcomes original articles, letters, case studies etc for inclusion in our very own online journal. See our website for submission details.
The primer subcommittee has also worked hard and this primer for physicians is now close to completion. It will provide an up-to-date, carefully researched, easy-to-read handbook for all health professionals. It has been produced by a team of experienced researchers and clinicians and will be widely distributed. As a result ongoing education of the medical community at large will be stimulated. 
Education for physicians and nurses is also easily available via an online presentation, sponsored by the CDC, by 3 of our respected members; Anthony Komaroff, Charles Lapp and Lucinda Bateman. CME credits are available for participation.  http://www.medscape.org/viewarticle/759095?src=cmemp

Many papers on CFS/ME and related conditions such as fibromyalgia and Gulf War syndrome continue to be published. We have over 90 abstracts from 21 countries this time including:  Brazil, Saudi Arabia and Israel (see attachment 3). Retraction of the 2 important papers citing XMRV studies have also taken place recently, and Ian Lipkin has written a letter regarding the state of the play in this issue (see attachment 4).
Meanwhile the good news is that 2 very large grants have been received for CFS/ME research. Bond University, Gold Coast, Australia in collaboration with Stanford University and Incline Village medical Centre have received over $831,000. An even larger grant of 1.6 million pounds sterling has been awarded by the medical research council in the UK (see attachment 5).
Two other interesting pieces of research are also in the pipeline. Professor Patrick McGowan (Toronto) is examining environmental triggers altering gene function in Chronic Fatigue Syndrome patients. And a group of US physicians is considering antiviral treatment for a subgroup of CFS patients (see attachment 6).

Other News
We recently received a report from Sweden, and we are reprinting this in our newsletter to inform our membership of the status of CFS in Sweden as reported by our colleagues. Our own mission statement-is research and clinically focused and does not include patient advocacy, although we do support patients through professional advocacy—befitting our credentials as scientists and clinicians. But we felt this item was important (see attachment 7).
While on the subject of advocacy, Leonard Jason has written a very useful and informative article (see attachment 8).
And finally we congratulate Dr. Nancy Klimas who has recently formed the Neuro-Immune Institute on ME/CFS at Nova Southeastern University, whose sole purpose is the study of neuroimmune diseases, particularly CFS/ME and GWI; the NSU Institute for Neuro-Immune Medicine (see attachment 9).
Please do write to us with any items of interest and forthcoming events in your area. 
Correspondence can be addressed to me at [email protected].
Very best wishes to you all 
Rosamund Vallings, MB BS

Forthcoming CFS and Related Events:

The 7th Invest in ME International ME/CFS Conference
1st June, 2012
Building a Future for Research into ME Clinical and Research Updates in Myalgic Encephalomyelitis

3rd Annual World Congress of Virus and Infection (WCVI-2012)
Time: July 30-August 1, 2012      Venue: Guangzhou, China

Massachusetts CFIDS/ME & FM Association
Spring 2012 Educational conference for patients and healthcare practitioners
Saturday 28th April 2012 - Keynote speaker: Benjamin Natelson MD
Contact: www.masscfids.org

Please let us know about any forthcoming meetings in your area.

Book Review  

An International Perspective on the Future of Research in Chronic Fatigue Syndrome    

Edited by: Christopher R. Snell
  • ISBN 978-953-51-0072-0, Hard cover, 104 pages
  • Publisher: InTech
  • Publication date: 2012-02-15
  • Subject: Immunology, Allergology and Rheumatology
This book is edited by a leading researcher in CFS and is available to download free of charge.

This is a stimulating if very scientific read. The on-line introduction says that while the chapters in this book are a long way from solving the enigma that is CFS, they do represent important attempts to understand this complex and perplexing disease. A common theme in them all is CFS as a multisystem disease with the possibility of more than one cause and influenced by a variety of interacting factors. Further, they acknowledge the reality of CFS for persons with this disease and the importance of finding causes, treatments and ultimately a cure. As advanced biomedical research techniques are increasingly applied to the study of CFS, it is surely only a matter of time before biomarkers are identified, etiologies understood, and remedies devised.

There are 5 chapters bringing together the work of some leading CFS researchers.

Book contents

 —Ros Vallings