Volume 5, Issue 2 • August 2012

August 1, 2012

IACFS/ME Newsletter

Volume 5, Issue 2 • August 2012

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

IACFS/ME President’s Letter

Dear Members and Colleagues,

I hope everyone is enjoying the season! Hot, cold, or moderate.

Two major IACFS/ME efforts are in play. First our ME/CFS Primer for Clinical Practitioners published on our website in May has received many favorable reviews. In addition, in its June meeting, the (US) CFS Advisory Committee in Washington, D.C. recommended wide dissemination of the Primer, particularly to primary care providers. The discussion included the National Guideline Clearinghouse (NGC) as a possible venue. 

The NGC is a website intended to make evidence-based clinical practice guidelines, related summaries, and companion materials widely available to health care professionals. It is supported by the Agency for Healthcare Research and Quality, the lead US agency charged with improving the quality, safety, efficiency, and effectiveness of healthcare.  In response to an invitation from the NGC, we submitted the primer for consideration in their guidelines listings. We have just received word that the Primer has been accepted for inclusion and posting on the NGC website in the fall.  This will facilitate much wider dissemination of the document.

A future revision of the Primer will consider the public feedback we have received including (a) concerns about the negative effect of any type of exercise in severely ill homebound patients; (b) requests for more information on the potentially positive impact of pleasant activities; and (c) strong sentiments for wide dissemination of the Primer.

Our second initiative is our new peer review journal, Fatigue: Biomedicine, Health and Behavior, to be published by Routledge/Taylor and Francis (www.tandfonline.com/rftg). The IACFS/ME-sponsored journal is a work in progress with submissions now coming in for the inaugural January 2013 issue. We welcome new submissions. The cover design is in this newsletter. (The last issue of the Bulletin was published this month.)

Finally, we have begun planning for our next biennial conference to be held in the San Francisco area in March, 2014. Dates will be finalized this fall. The conference will be co-sponsored by Stanford University. Our thanks and appreciation to Stanford physician Jose Montoya and board member, Lily Chu, for their invaluable assistance in developing this important sponsorship.
With best regards,

Fred Friedberg, PhD

Message from Ros Vallings, newsletter editor

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

As I write this I am looking out at our rather wintry wet and muddy paddocks here in New Zealand, ironically the time when our lambs choose to be born. Most of my CFS/ME patients tend to stay inside at this time of year, as often the cold weather risks relapses. But unfortunately staying inside too much does risk lower Vitamin D levels and less melatonin release. This brings me to our usual brief focus on the: 

The epidemic of a nasty flu-like illness, which occurred in Akureyri, Iceland in 1948, led to many people remaining chronically ill, often for years, with what we now call ME/CFS. For a long while after that, the illness was known as Icelandic Disease. In winter in Iceland, the days are short, and I have heard it said that one reason so many people had long-lasting and severe ME/CFS was lack of sunlight and the additional risks of seasonal affective disorder with an accompanying poor sleep/wake cycle. Patients particularly relapsed in winter. 

Meetings, Conferences
In May I was able to attend the 7th Invest in ME conference in London. My report is attached (Attachment 1). The Norwegian research looking at ME/CFS as an auto-immune condition and the potential use of the drug Rituximab provided much hope. The conference was preceded by a 2-day ME/CFS Clinical Autoimmune Working Group meeting, convened by Invest in ME and the Alison Hunter Memorial Foundation. I was privileged to attend this meeting of 25 invited prominent researchers and clinicians. Research into ME/CFS was presented and discussed with a view to ongoing international collaboration. This was an exciting event, and Professors Don Staines and Tim Wild will be producing an overview. A similar meeting (MERIT) was convened soon after by Dr Andreas Kojelnik in New York. For his report see (Attachment 2). These smaller working groups seem to be achieving a lot, and the idea of inviting top researchers who have not previously been involved in this illness to share their expertise is a very positive move.  
The IACFS/ME board are currently planning the next biennial conference, and information on date and venue should be available in your next newsletter.

Board Activities
We are delighted to welcome Nereida Littrell as a new board member. Nereida has already proved herself by getting involved in several worthwhile projects, and her expertise will be very welcome.
The Primer for Physicians is now available to download from our website. All the efforts by the primer committee have proved worthwhile and the result is a quality booklet. We have been getting excellent feedback, and many ME societies around the world have welcomed such an up-to-date and complete approach. There will need to be regular updates, but this should not be hard to achieve in this electronic age. We are always happy to receive critique and ideas for future inclusion. A primer sub-committee are already working on the next edition. We welcome donations towards this project and for downloading copies.
The IACFS/ME Bulletin will be replaced in 2013 by a peer review journal looking at all aspects of fatigue. The name of the journal will be: Fatigue: Biomedicine, Health & Behavior (cover - Attachment 3). Articles can be submitted to Fred Friedberg for inclusion. Author instructions may be found at: www.tandfonline.com/rftg. It is hoped that this journal will be widely read with international contributions of high quality research. Meanwhile the current Bulletin and past issues can be viewed on our website.
Fundraising is always foremost in our minds, and we have received a substantial grant towards the next conference in San Francisco.

As already mentioned the work on auto-immune links to CFS/ME is progressing and further studies are in the pipeline. Dr Kojelnik at the Open Medicine Institute is encouraging collaboration internationally and the gathering of databases, work towards reliable biomarkers, use of standardised forms etc. Here in NZ for example, Professor Warren Tate (who recently won NZ’s top science award) has established a new laboratory to set up a biobank for ongoing research into CFS/ME using participants who reliably meet the International Diagnostic Criteria. In Queensland, Australia a quality team of top researchers, headed by Don Staines and Sonya Marshall-Gradisnik is also looking at biomarkers and the involvement of vaso-active neuropeptides in ME/CFS..
Reference to an earlier article published by Leonard Jason provides wonderful clarity when he provides comparisons between the various case definitions (Attachment 4). This article (reproduced in full) emphasises the many differences and shows us the importance of consistency in research.
Many papers on CFS/ME and related conditions continue to be written and published in prestigious journals. We have abstracts from 89 papers from 22 countries around the world (Attachment 5). We have had papers from 31 different countries in the last year, which is indeed exciting.  
An article written by Dennis Mangan regarding “winning a research grant” provides really useful advice for would-be researchers, and I thank Dennis for providing this for us (Attachment 6). We are pleased to have something quite different to include and many members interested in grants will find it a “must read”.

Other News
A sad loss to the ME/CFS world has been the death of pioneer and stalwart Dr Betty Dowsett (obituary – Attachment 7). I met Betty some years ago and she was such an energetic and enthusiastic person. She will be much missed in the UK.
Australia has a wonderful spokesperson/advocate for their cause, based in Melbourne, Victoria. He is Professor Simon Molesworth, QC A.M. He made a plea on Awareness Day reported widely in the media for: Better research and treatment funding for ‘the most woefully neglected illness in the country’. As a very high profile person, it is hoped he will be listened to (Attachment 8).
If any of you have news from your region on any topic relating the ME/CFS or interesting snippets about local research etc, we would love to hear from you. We also welcome items of general correspondence discussion. We want our members to be involved! 
Correspondence can be addressed to me at [email protected].
Very best wishes to you all 
Rosamund Vallings, MB BS

Forthcoming CFS and Related Events:

While there are no current ME/CFS conferences being advertised, this conference may be of interest to those who are now looking at the autoimmune aspects of ME/CFS:
9th International Congress on Autoimmunity   -    March 26-30, 2014   Nice, France

The 9th International Congress on Autoimmunity is the world’s foremost gathering of top experts in immunology, rheumatology and related fields. In 2014, we will repeat the success of our previous meeting which was comprised of 81 symposia featuring 600 leading speakers. Utterly unique in scope, Autoimmunity 2014 is one meeting you cannot miss. First established by renowned autoimmunity expert Professor Yehuda Shoenfeld, the congress will address the genetic, etiology, diagnostic, clinical aspects and novel therapies of 80 autoimmune diseases. Join your colleagues in breathtaking Nice, France, on March 26-30, 2014 and learn about the newest therapeutic techniques and diagnostic tools.

Kenes International

1-3 Rue de Chantepoulet

PO Box 1726, CH-1211
Geneva 1, Switzerland

Tel: + 41 22 908 0488
Fax: + 41 22 906 9140
E-mail: [email protected]

This website is also a useful resource for anyone looking for conference details on a particular topic:
Please let us know about any forthcoming meetings in your area.

Book Reviews   

Love and Fatigue in America    

By Roger King
Published by University of Wisconsin Press, March 2012

This is a book about being ill with ME/CFS, but still being able to undertake a long journey through the United States. This often comic look at the illness has received some excellent reviews.  But even though interspersed with humour, the author experiences the serious side of the illness, and the  innevitable skepticism that accompanies it. He talks also about the problems with the US healthcare and insurance systems, which certainly gives a new insight for those outside of the US, who have never experienced these things.  Despite the sometimes depressing aspects of his experiences, there is a combination of excitement and poignancy in this worthwhile text.
Let Your Light Shine Through 
Strategies for Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity 
By Dr Eleanor Stein MD FRCP (Psychiatrist)
For many years, Dr. Stein's patients in and around Calgary have had the opportunity to attend a series of groups on managing the symptoms of ME/CFS, FM and MCS. She has now made a manual covering the important topics from this group. This will be of tremendous assistance to anyone considering setting up psychotherapeutic or support groups. It will also be of tremendous assistance to individuals wanting to work through the various issues that they face. We would like to thank Dr. Stein for her work.
Review by:  Margaret Parlor, President, National ME/FM Action Network

I agree wholeheartedly with what Margaret has written and I am sure many will benefit from using this very important treatise which will serve as a balanced and sensible workbook.

 —Ros Vallings