ME/CFS Primer/Education Newsletters Volume 7, Issue 1 • August 2014

Volume 7, Issue 1 • August 2014

August 1, 2014
 

IACFS/ME Newsletter

Volume 7, Issue 1 • August 2014

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

CONTENTS

IACFS/ME President's Letter

Welcome Message from Ros Vallings, newsletter editor

History
Board Activities
Primer Committee
Research
Journal
Webinars

Meetings

Book Review




IACFS/ME President’s Letter

 

Dear IACFS/ME Members,

We are now in the process of deciding on a location for the 2016 biennial conference. This depends on the level of advance funding that may be offered or available for a particular city. Usually we select a city that is a major travel destination. Such attractive venues increase the number of abstract submissions and generate higher overall attendance. Please feel free to contact me if you have any possibilities to consider, especially with respect to funding.

Journal. Our Association-sponsored journal, Fatigue: Biomedicine, Health and Behavior published by Routledge/Taylor and Francis continues to accept manuscripts on a variety fatigue-related topics, including recently published studies on these subjects: the role of sleep in CFS, validating a measure of ME/CFS symptomatology, fatigue in Grave’s Disease, and measuring fatigue in mothers of infants. We welcome your submissions.

http://www.tandfonline.com/toc/rftg20/2/3#.U-T_1dh0zIU

In May, we submitted an application to index our journal on Medline which is the journal citation database of the National Library of Medicine. Medline indexing greatly increases the visibility and standing of a journal. We should have a decision on this next year.

Primer. In other news, our 2014 revision of the ME/CFS Primer for Clinical Practitioners unveiled at the San Francisco conference in March is now available for order and delivery on bookpatch.com.

http://www.thebookpatch.com/BookStore/mecfs-a-primer-for-clinical-practitioners/968b02f7-5f8c-4a7c-895d-a1a33c72fc9f

The bookpatch primer is an attractively covered spiral bound manual (47 pages) which is easy to reference (cost: $20). The primer is also available for download at no charge through the IACFS/ME website (a small donation is requested).

ME/CFS Primer for Clinical Practitioners

The primer writing committee with IACFS/ME board backing has voted to post approved new text on our website. This new text will be incorporated in the next revision of the primer which is expected to be released at the 2016 conference. As of this writing, new text has been approved to further address the mortality issue in CFS/ME and to make a small change in suggested dosage for a medication. Click on this link:

Approved Changes

On a sad note, Ken Friedman, PhD, our treasurer has resigned. We thank him for his five years of service. Board member Dennis Mangan has generously agreed to become our new treasurer.

We are now looking for volunteers to be on our fundraising and membership committees. These are critically important bodies that help to sustain our organization. Please contact me if you have an interest.

With best regards,

Fred
Fred Friedberg, PhD
President
IACFS/ME

www.iacfsme.org

 




Message from Ros Vallings, newsletter editor

 

 

Dear All,
In our last newsletter we reported on all the new research and findings emanating from the San Francisco conference and Stanford symposium. A video link is now available of the Stanford Symposium (http://mecfs.stanford.edu/2014SymposiumVideo.html). Since then there has been a most successful 9th Invest in ME conference in London. Again top international researchers were presenting, and the overall feeling was one of how at last there is such firm evidence for the reality of this being a truly physical illness. I was able to attend this conference and my report is attached (attachment 1). The conference was preceded by a one-day symposium (4th Biomedical Research into ME Colloquium - IiME BRMEC4) for which top researchers were specially invited to present a brief resume of their current work and to then brainstorm. As always some attended who had not previously been involved in the field, to help shed new light and ideas. A report of this closed meeting is available to Health Professionals, and a DVD of the main conference is also available: http://www.investinme.org/IIME%20Newsletter%20August%202014.htm.
 
As always conferences provide an opportunity for networking among researchers, clinicians, supporters and of course those with the illness. I am sure as a result much interest is generated coupled with ongoing collaborative research.
 


History
 
I mentioned in the last newsletter that Rosemary Underhill and I had discussed our experiences in London around the time of the Royal Free epidemic. We have now been approached to participate in a new film “Canary in a Coal Mine” focusing on the history of the illness and including our experiences. The producers are looking too for any survivors of that original epidemic, so if you know of anyone who could be interviewed, please contact: Jennifer Brea (jenbrea@gmail.com). It is somewhat daunting when one realizes one is becoming part of history! But another member of IACFS should not be forgotten – in March in San Francisco, Mary Ann Fletcher (Miami, FL, USA) – was described as having much wisdom after 35 years of research into this illness. In 1990 she found reduced NK function with elevated pro-inflammatory cytokines. These findings have been confirmed around the world and are potential biomarkers. She is indeed a pioneer.
 


Board Activities
 
The board is catching up after the meeting in San Francisco. The biennial conference is the one opportunity we have to get together, although we do have regular Skype meetings. New board members have been settling in to the role. It does take a while to find a niche and discover what one can actually do to be of practical use. We are currently a truly international board with members from Europe and Australasia as well as the US. Sub-committees are gradually being formed to undertake specific roles and we are always keen to hear of anyone with specific interests who could be of help.
 
We are very sad to lose our longstanding treasurer Ken Friedman who recently resigned. Ken has provided a wealth of expertise and many hours of hard work keeping us on track financially. We wish him well for a happy and fulfilling retirement. The new treasurer is Dennis Mangan, who is well qualified to fulfil this role.
 


Primer Committee
 
The primer committee will continue to review and update the primer with a view to a new edition every 2 years. Important research findings will be regularly updated on the website. On a personal note, here in New Zealand we have distributed this to every GP in the country, and it has been widely acclaimed with requests for extra copies for clinic staff members. I would certainly recommend this approach. The checklists for diagnosis have proved very popular, and certainly make life easier for the physician trying to make a diagnosis.
 
Meanwhile a committee has been convened to produce a Paediatric Primer. This committee includes top paediatricians and CFS/ME researchers from around the globe. It is a big undertaking and needs to be carefully researched as for the adult Primer.
 


Research
 
It was heartening to hear at the conference in Britain about the growing support for research funding from bodies such as the Medical Research Council, and Invest in ME have reached their initial goal to fund a trial to replicate the Norwegian findings using Rituximab. http://www.ukrituximabtrial.org/.
 
In 2014, ME Research UK reached a milestone, topping the £1 million mark in grants awarded to researchers. This represents 35 specific biomedical projects, the results of which have now been published as 58 research papers in peer-reviewed scientific journals. See http://www.meresearch.org.uk/news/research-overview/ for a good overview of their work. And http://condor.depaul.edu/ljason/cfs/ provides an update on the work of Leonard Jason and his team at de Paul University, USA. Other work continues based in prestigious organisations such as Newcastle University UK, Griffith University, Australia, Simmaron research, the Open Medicine Institue and Chronic Fatigue Initiative etc. This is just a smattering of what is going on around the world.
 
Abstracts of publications from 11 countries are attached (attachment 2), including for the first time papers from Portugal and Malaysia. Over the last 5 years we have had papers from 45 countries.
 
Recently Dr Cindy Bateman gave a talk giving a good overview of the illness, and explained how the pieces are finally slotting together like a jigsaw. See: http://www.cortjohnson.org/blog/2014/07/17/mystery-longer-big-picture-emerging-chronic-fatigue-syndrome-dr-bateman-talks.
 


Journal
 
Fred Friedberg has continued to edit the journal “Fatigue: Biomedicine, Health & Behavior” which is published 4 times a year. The latest edition has recently been published on: 23 Jul 2014. See: http://www.tandfonline.com/toc/rftg20/current#.U_E5AJXlpMs for a list of contents, and for a subscription; the Journal can be downloaded online.
 


Webinars
 
A series of webinars are now being produced by different ME/CFS organisations, and you can view these on the following links and you can subscribe to the e-mailing lists for future events:
 
 
https://www.youtube.com/watch?v=3smCvgi3DlI&feature=youtu.be (Next speaker will be Leonard Jason from Chicago, starting on September 2nd, 2014.)
 
If you have any items of interest for future newsletters or correspondence, notice of meetings etc., please send them to me at: Vallings@xtra.co.nz
 
Very best wishes,
 
  Ros
Ros Vallings



Meetings

 
CFS/ME Fachtagung (symposium) Dortmund, Germany Sept. 27, 2014
 
Hotel Park Inn, Olpe 2, 44135, Dortmund
 
Contact Dr Wolfram Kersten, Bamberg: http://www.fatigatio.de/mecfs-fachtagung-270914/
 

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

 
UK Research conference - held by UK ME/CFS Research Collaborative 
 
1–2 September 2014 – University of Bristol
 
 
 

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

 
ACSM's 62nd Annual Meeting, 6th World Congress on Exercise is Medicine® and World Congress on the Basic Science of Exercise Fatigue
 
May 26-30, 2015
San Diego, California
 
 



Book Review

Why Does Mommy Hurt
 
by Elizabeth M Christy
 

Helping children cope with the challenges of having a parent or caregiver with chronic pain or fibromyalgia.

“Diligently researched, carefully crafted and beautifully illustrated, this is a rare gem that puts the medical and psychosocial challenges of fibromyalgia, chronic pain and autoimmune disease in a form that kids can actually absorb. A true gift for moms and dads.” 
John D. Giglio, M.A., J.D. 
Former Executive Director, American Pain Foundation

"This is a must-have book if you live with chronic pain and have small children."
–Lene Anderson, HealthCentral.com, 5/21/14

"This book will help millions!" 
–Jan Chambers, President of the National Fibromyalgia and Chronic Pain Association

"It's difficult to explain to a child what chronic illness means, especially when kids relate being sick to something easily overcome, like a cold."
Crystal Owens, Loudoun Times Mirror; Front

http://whydoesmommyhurt.com/ 
Available in hard cover or as an e-book

 


 



Disclaimer: IACFS/ME's mission is to stimulate and promote exchange, discussion, and dissemination of information around any and all aspects of ME/CFS, FM, and associated medical conditions. The Newsletter helps support that mission and we encourage submissions to the newsletter not only from our current membership but any interested party. IACFS/ME is not responsible for statements made by any contributor. Statements or opinions expressed in the Newsletter reflect the views of the author(s) and are not the official stance of IACFS/ME or the IACFS/ME Board unless otherwise stated. Mention and/or discussion of a test, treatment, procedure, product, person, website, or service in this Newsletter is not equivalent to an endorsement by this organization.

The medical information in this Newsletter is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Also recognize that information can change and that this Newsletter may not have been updated to incorporate the most current information. IACFS/ME expressly disclaims responsibility, and shall have no liability, for any damages, loss, injury, or liability whatsoever suffered as a result of your reliance on the information contained in this site.

This Newsletter is an Official Publication of the International Association for CFS/ME (IACFS/ME), and is provided to association members and friends. Any comments, concerns or interest in publishing articles should be directed to newslettereditor@iacfsme.org or IACFS/ME, 9650 Rockville Pike, Bethesda, MD 20814.

All rights reserved. This publication is protected by United States copyright and other intellectual property laws and may not be reproduced, rewritten, distributed, re-disseminated, transmitted, displayed, published or broadcast, directly or indirectly, in any medium without the prior written permission of the IACFS/ME.