ME/CFS Primer/Education Newsletters Volume 4, Issue 1 • April 2011

Volume 4, Issue 1 • April 2011

April 1, 2011
 

IACFS/ME Newsletter

Volume 4, Issue 1 • April 2011

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


 

CONTENTS

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

History
Conferences
IACFS/ME Activities
Research
Media Coverage
Awards
Correspondence

Forthcoming CFS Events

 

Book Review

 




IACFS/ME President’s Letter


Dear IACFS/ME Members,

I hope this transition into the new season finds you well!

I’ve just returned from the ME/CFS State of the Knowledge meeting (April 7-8) at the National Institutes of Health in Bethesda, Maryland. This was a multidisciplinary convocation of about 30 scientists, clinicians and advocates intended to present current biomedical research on CFS/ME. Dennis Mangan, the NIH official who assembled the meeting, succeeded in providing an important interactive forum for the exchange of ideas in this difficult and challenging field. The agenda of the meeting is available at: https://www.infinityconferences.com/InfiniBase/Templates/157557/Agenda.htm?forumid=331851

Perhaps most important and surprising, Kathleen Sebelius, the Secretary of Health and Human Services, wrote a letter of support to the meeting participants. In addition, Francis Collins, the NIH director, made a personal appearance to express his support for the proceedings. Also, several of the principal CDC scientists who conduct CFS research, including Beth Unger (CFS program head), Jim Jones, and their branch chief, Steve Monroe, were all in attendance. I was able to meet with Beth Unger who expressed a refreshing openness to new ideas that may potentially guide their CFS research.

What practical effect these expressions of high level government support will have remains to be seen. Our hope is that we will have new program announcements with funds dedicated to CFS/ME research. CFS research funding in the US is near the bottom of 200 disease and domain areas as published by NIH. Relevant to these critical funding issues, we also need to encourage our graduate and professional students to consider a career in CFS/ME research and clinical service, given that the field is still small and apparently not growing.

As the only international scientific organization dedicated to CFS/ME, your support of the IACFS/ME is critical to the advancement of research, practice, and education. Our upcoming international research and clinical conference in Ottawa, Ontario, Canada (Sept.22-25; www.iacfsme.org) provides an important (and rare) opportunity (a) to learn about the latest research in a stimulating cross-disciplinary intellectual forum; (b) to develop new (and potentially exciting) collaborations to expand the knowledge base and increase publication rates; and (c) to provide beginning researchers and clinicians the support and information they need to consider working in our field.  

We hope to see you in Ottawa!

Best regards,

Fred
Fred Friedberg, PhD
President
IACFS/ME

www.iacfsme.org

 




Message from Ros Vallings, newsletter editor


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


The last few months seems to have been a busy time in the CFS/ME world.  There have been several conferences and meetings, a number of published papers, and much discussion on the internet and in the press.  Further studies regarding the incidence and relevance of XMRV continue and there are still no firm conclusions.  The international research however is moving on in this and other directions as we learn more and more about this perplexing illness. Patients of course are frustrated by a lack of laboratory tests and opportunity to try anti-retroviral drugs, but should be encouraged by the volume of research.  We are excited about the forthcoming IACFS/ME conference in the beautiful city of Ottawa later this year and encourage you to submit abstracts and plan to join us for this stimulating event.



History


I have been privileged to know Professor Campbell Murdoch, one of those involved in the early recognition of this illness, and he kindly penned a resume of his almost 30 year involvement with CFS/ME from the days of his work in Scotland and then here in New Zealand at the time of “Tapanui flu” (see attachment 1).



Conferences


There have been several relevant conferences in the past 3 months. On 28/12/2010 a conference focussing on XMRV and CFS was held in Oslo, Norway. The conference was ably reported by Dr. Mette Johnsgaard (see attachment 2). 

Over 4,000 leading researchers and clinicians from around the world convened in Boston, Massachusetts from February 27 through March 2, 2011 for the 18th Conference on Retroviruses and Opportunistic Infections (CROI). See this link for the papers on XMRV http://www.retroconference.org/AbstractSearch/Default.aspx?Conf=20.

A number of leading CFS/ME physicians met in Florida in early March. As a result there will be expansion of the research using Ampligen. The possibility of a test analyzing fragments of DNA often released into the bloodstream during the process of apoptosis or programmed cell death was also discussed.



IACFS/ME Activities

The board continues to be busy and active. We were sorry to lose Suzanne Vernon and wish her well. We have appreciated her skilled input.

The membership committee continues to encourage international involvement and hopes to recruit more representatives. We have had interesting contributions from Canada including a survey of patient profiles and functional status (see attachments 3a & 3b). We welcome contributions of this nature or about activities in your region. Please contact Ken Friedman for membership enquiries or if you wish to represent your country. (friedman@umdnj.edu)

The guidelines committee are working hard towards producing an up to date evidence-based physicians’ primer. It will be a concise easy-to-read desktop reference booklet to be launched at the Ottawa conference. It will be targeted at primary care physicians and other health care providers and will be regularly updated on line. A detailed reference section will be included for those who want more detail.

Gudrun Lange continues her hard work producing The Bulletin. The latest Bulletin is available to members on our website. Regular quality contributions are invited for peer review, and abstracts, letters to the editor and case studies can be sent (greg@iacfsme.org).



Research

Since the Science paper on XMRV 18 months ago, XMRV dominated the news, and much research has continued worldwide. A new study from Japan showed no association between XMRV and prostate cancer or chronic fatigue syndrome in Japan. But international research into all other aspects of the illness also continues to move ahead. Most recently a paper by Steven Schutzer showed that distinct cerebrospinal fluid proteomes differentiate post-treatment Lyme disease from CFS. (See attachment 4 for abstracts of these and other recent papers).

Papers on other associated and overlapping conditions such as fibromyalgia, chronic pain and irritable bowel syndrome will also be of interest to many readers. (See attachment 5). Diagnostic awareness is important for clinicians.

Altogether it is exciting to think that we have papers here from 16 different countries, including Serbia, Turkey and China.



Media Coverage


There has been much discussion following the article in the Lancet on the PACE trial in Britain. Many patients are disturbed by the recommendations. A number of responses from prominent British medical experts were then published (see attachment 6).

On March 17, 2011 the Chicago Tribune published an article entitled: “Research casts doubt on theory of cause of chronic fatigue” reporting on an interview with Robert Silverman and with further comments a day later (see attachment 7).

A recent series of excellent weekly articles about CFS/ME have appeared in the Wall Street Journalhttp://online.wsj.com/article/SB10001424052748703858404576214443015558976.html#articleTabs%3Darticle



Awards


It is always exciting to see recognition for those who have been involved with CFS/ME. The Miller School of Medicine Medical Alumni Association recently bestowed one of its highest honors: “The Distinguished Alumni Award”, on Dr Nancy Klimas.

Dr Steven Schutzer and his team who recently published the study on unique proteins in CFS spinal fluid received one of the inaugural Gordon Batelle prizes for scientific discovery. The award celebrates breakthrough laboratory achievements.

Ekua Brenu, a PhD student at Bond University, Australia has received the prestigious Women in Technology Rising Star award for her work with CFS.



Correspondence

We have thankfully received reassurance from our board member Dr Teruhisa Miike that he and his family are safe following the recent Japanese earthquake and Tsunami. We wish them well. We also had an interesting letter from Jun Tsutsumi in Japan who reports on a TV programme there in February about CFS (see attachment 8).

A woman with CFS/ME, Karen Ficano has written expressively about her positive experiences of attending previous IACFS/ME conferences and how patients may benefit from the experience (see attachment 9).

Please do write to us with any items of interest or about up and coming meetings or events in your area. It would be interesting to hear what is planned for ME Awareness day, 12th May.

Correspondence can be addressed to me at Vallings@xtra.co.nz.


Very best wishes to you all,
Ros
Rosamund Vallings, MB BS




Forthcoming CFS Events:


The National Institutes of Health (NIH) will convene a State of the Knowledge Workshop on ME/CFS Research on April 7-8, 2011. This conference is being organized by a steering committee comprised of NIH staff, researchers and patient advocates. The meeting will be open to the public and webcast.

The 6th Invest in ME  International ME/CFS Conference 2011 - The conference will be held on 20th May 2011 in Westminster, London and builds on the successful biomedical research conferences organised by Invest in ME in previous years. The theme is: The Need for Guidelines, Clinical Trials and Treatments for ME/CFS.

The 15th International Conference on Human Retrovirology, HTLV and Related Viruses will take place June 4-8, 2011 in Leuven, Belgium. abstracts are due Mar. 1, 2011.
 
IACFS/ME Conference Ottawa,Canada on 22-25 September 2011. ‘”Translating Evidence into Practice” 
Abstracts for oral or poster sessions are invited.
http://www.iacfsme.org/Portals/0/emails/images/2011/2011.3.8.html


                                                                                       

Ottawa, Canada


2011 Frontiers of Retrovirology conference  - Oct 3-5 in Amsterdam, Netherlands.
Following the success of the inaugural Frontiers of Retrovirology meeting in 2009, this second conference will bring together leading human retrovirus researchers to review current progress and to chart future challenges.

RV retrovirus of mouse origin has recently been implicated in diverse human diseases. At Frontiers of Retrovirology 2011, internationally renowned speakers will present their insights into the principles guiding the life cycle of endogenous retroelements, complex human retroviruses, and their pathogenic interactions with the hosts.
http://www.frontiers-of-retrovirology.com/programme.html

 




Book Review
  

The Sound of a Wild Snail Eating
By Elizabeth Tova Bailey
Text Publishing Co, Melbourne, Australia. 2010

This is a remarkable book written by a woman with CFS/ME about her experiences at a time when she was severely ill.  She was bedridden, living alone and in need of almost total care.  She received a gift of a live snail from a friend.  She wonders initially “Why would I want a snail?”  but it quickly becomes obvious that this small creature could provide a fascinating interest.  She is inspired to watch and listen, and in so doing discovers much about the life of the snail.  She also discovers she has a worthy living companion to whom she becomes devoted.  She is further stimulated to study snails in detail so that she is able to fully nurture her companion.

This book is beautifully written with many meaningful quotations throughout.  It is very easy to read, and it is the sort of book one cannot put down.  It also gives tremendous insight into the author’s illness with the accompanying feelings of trapped loneliness.  To be able to care for a snail may seem trivial to some, but it demonstrates the restraints of the illness, coupled with the joy of being able to love and nurture another being.  One can only be inspired.

I thoroughly recommend this book to those with the illness, their families, doctors and all those involved in their care.
 
—Ros Vallings, MB BS

 

 

 

 



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