ME/CFS Primer/Education Newsletters Volume 5, Issue 3 • December 2012

Volume 5, Issue 3 • December 2012

December 1, 2012
 

IACFS/ME Newsletter

Volume 5, Issue 3 • December 2012

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
News Items
Research
Obituaries

Forthcoming Events and Conferences

Book Reviews

 



IACFS/ME President’s Letter


Dear Members and Colleagues,
We are very excited about the January 2013 launch of our new peer review journal: Fatigue: Biomedicine, Health and Behavior. The quarterly journal will be published by Routledge/Taylor and Francis. Among the seven papers in the first issue, we will feature a review article on envelope theory by award-winning CFS/ME researcher Leonard Jason. Also the new issue will highlight a controlled study from the University of California research team headed by renowned sleep expert Sonia Ancoli-Israel. The topic: chronic fatigue and sleep disruption in cancer patients with implications for light therapy treatment. My journal editorial will appear in mid-December online in advance of the full inaugural issue. Of course, we encourage and welcome new submissions to the journal. For information on submitting your manuscript, use this link: http://www.tandfonline.com/loi/rftg20.
Our new subscription-based publication, available online and in bound print form, will be the official journal of the IACFS/ME. In collaboration with our publisher, we will be applying for Medline indexing when acceptance is likely. All professional members of IACFS/ME will have complementary login access to the online journal. (The bound print version [mailed to your door] is available to members for an additional charge of $30 a year.) Membership information may be found at: http://www.iacfsme.org/MembershipOptions/tabid/211/Default.aspx.
To cover the cost of journal subscriptions for our membership, we are increasing professional member dues (as of Dec.1st) from $150 to $195 for a two-year renewal—that amounts to $22/year for online access to 4 issues of our peer reviewed fatigue journal—a very good deal. Overall we believe that you as a valued member of IACFS/ME are receiving good and important services for your member dues. In addition to our new journal, the first to be published on the subject of fatigue, our services to you as a CFS/ME-interested individual include:

 

  • A biennial international research and clinical conference on CFS/ME—the only one of its kind
  • Publication of the well-reviewed 2012 ME/CFS practitioner’s primer (now available in spiral book form at Bookpatch.com) -- soon to be available in Spanish, French, and Japanese
  • A 3x a year IACFS/ME Newsletter reporting on recent CFS/ME events, research, and book reviews
  • Timely position statements on critical CFS/ME issues (PACE trial, DSM5, ICD-10)
  • Formal responses to journal articles which convey less-than-accurate information about ME/CFS (most recently to address a CFS/ME piece in American Family Physician, Oct. 2012)

Over the past three years, we have stepped up our commitment to strong and consistent scientific advocacy. Given all of these efforts and initiatives, we believe you are getting good value for your membership dues.
Finally, we have firmed up the dates (March 20-23, 2014) for our next international research and clinical conference to be held in San Francisco. We are proud to have the meeting co-sponsored by Stanford University. Please save the dates—we need and welcome your support!
With best wishes for the holiday season,

Fred
Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org


 




Message from Ros Vallings, newsletter editor


 

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

 

It is hard to believe that 2012 is nearing a close and we are already approaching the Christmas season. Time moves fast when things are busy, and for your board this has been a very busy 4 months. As you will see below, a lot has been happening in the world of CFS/ME, which no doubt in time will become part of our history. 
 


History
 
But we can go back a very long way to when it all began. In ancient Babylonia, Hammurabi (1728-1686 BC) set up a code of medical practice containing laws regulating medical practice, which was further outlined in a Diagnostic Handbook. It was assumed that by inspecting the symptoms displayed on the body of the patient, one can diagnose a disease, determine its etiology and future development, and predict whether the person will live or die. For the Babylonians, the etiology of the disease was in the realm of the gods. An illness we now call CFS/ME was described in detail. It also specified severe penalties for a healer who failed, with some penalties being as severe as amputating the physician’s hands. I am rather glad we live now! 


 
Board Activities
 
The IACFS/ME Physician’s Primer is now being widely distributed and has been very well received. It can be downloaded from our website, or a user-friendly spiral bound print copy can be ordered from bookpatch.com: http://www.thebookpatch.com/BookStoreDetails.aspx?BookID=10826&ID=3d4b3a32-e1b8-479e-b6cd-35c38254f776
ME/CFS groups can obtain permission for bulk photocopying from IACFS/ME for a donation. Board member Nereida Littrell has almost completed a translation into Spanish.
The first issue of the new IACFS/ME “Fatigue” Journal (replacing “The Bulletin”) will be published shortly. Many thanks go to Fred Friedberg, who has worked tirelessly, as editor, to get this off the ground. We anticipate this publication with excitement, and invite papers for consideration.
There has been an “Open Comment” period for the ICD-10-CM concerning the correct coding for CFS/ME, and on behalf of the board Ken Friedman has penned an appropriate response (Attachment 1).
An article appeared recently in the European Journal of Clinical Investigation: Exercise and chronic fatigue syndrome: maximize function, minimize post-exertional malaise (Attachment 2) and it was thought important for the board to respond. We discussed this and Lily Chu has written appropriately on our behalf (Attachment 3). Meanwhile the American Family Physician has published an article by J.R.Yancy entitled: Chronic Fatigue Syndrome: Diagnosis and Treatment (Attachment 4). This is the journal of the American Association of Family Physicians, providing guidelines for clinical management. We feel that this article does not accurately address the needs of CFS patients, and an appropriate reply is in the pipeline.



News Items
 

CFS/ME has certainly been in the news recently. Results of the Lipkin study into XMRV were finally released at a press conference on 18th September, 2012, with researchers finding no link between XMRV and CFS. Press releases from Nature, the British ME Association and the BMJ are attached (Attachment 5).

President Obama spoke in Reno, Nevada, on August 18th, 2012. He was asked for help for CFS/ME. As a result he has designated his deputy chief of staff to work with the NIH and convey urgency about the illness (Attachment 6).

The Daily Telegraph (one of Britain’s leading newspapers) recently published an article “ME isn’t all in the mind” as a result of an interview with Dr Charles Shepherd (Attachment 7). This was timely following Professor Simon Wessely’s award of the inaugural John Maddox Prize for “Courage in the field of ME/Gulf War Syndrome”. This award has shocked members of the British ME Association, and Professor Malcolm Hooper and the ME community have written an excellent extensive response (Attachment 8).
 


Research
 
Research work continues worldwide, with growing interest in other fields related to Fatigue, Pain and Sleep. Dr Linda Paulson from Oslo has sent in a report on the progress of the development of ME/CFS collaborative research biobanks in Oslo and London (Attachment 9).
The American College of Rheumatology at their annual meeting reported on studies showing for the first time that μ-opiod receptor binding is tightly associated with the brain’s response to pain in fibromyalgia (Attachment 10).
Dr Andreas Kojelnik has provided us with an overview of the OMI-MERIT initiative to date covering their current projects. There is some exciting collaborative work going on (Attachment 11).
I am attaching a list of 87 research abstracts published in the past 4 months (Attachment 12).  There are contributions from 19 countries including Latvia, Poland and Turkey. You may think that 3 of the articles are not necessarily relevant to ME/CFS, but they have important points which are useful for those clinicians involved in treating the illness: a) There is some reassurance for those wishing to use hormone replacement therapy, as long term risks seem less worrying, as many women with CFS do well on this therapy. b) Gabapentin (used mainly for pain in CFS) has been found to also relieve the chronic cough many CFS patients suffer and c) A good overview for clinicians of interactions between prescribed medication and herbal remedies, as so many of our patients inevitably try a wide range of alternatives.
The group which was involved in publishing the International Consensus Criteria (ICC), have recently released their associated primer, edited by Bruce Carruthers. http://hetalternatief.org/ICC%20primer%202012.pdf
This has a different format from the IACFS/ME Primer and is based on the ICC for diagnosis.

We have had an unusual paper sent in to us by one of our members, Dr. Antoni Fernández-Solà from Spain, on the use of clean air in treating Multiple Chemical Sensitivity (Attachment 13). It is attached here for your interest and comments.



Obituaries
 
Two people who have been prominent in CFS/ME over the years have died recently: Dr William Reeves, on 3rd August, 2012, and Dr Rich Van Konynenburg on 26 September, 2012. Their obituaries are attached (Attachment 14). Our sympathy goes out to their wives and families. Our condolences also to Dr Bruce Carruthers, whose wife, Janella died recently. 
 
Correspondence can be addressed to me at Vallings@xtra.co.nz.
 
Wishing you all the best for a relaxing and good break over the Christmas holiday period. 

Ros
Rosamund Vallings, MB BS




Forthcoming Events and Conferences

22 January 2013 Conference:  APTA=American Physical Therapy Association


Best Practices Update for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: The IACFS/ME Primer for Clinical Practitioners


Speakers: Todd E. Davenport, PT, DPT; Staci R. Stevens, MA; Daniel L.Peterson, MD; Kenneth J. Friedman, PhD


Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is one cause of clinically debilitating fatigue. Its features have been related to Gulf War syndrome and post-9/11 syndrome. CFS/ME may present a spectrum of symptoms, providing multiple reasons for entry to physical therapy. Physical therapists are in a unique position to identify CFS/ME and to direct appropriate management through both physical therapist interventions and referral to other health care providers. Over the past 2 years, an international working group of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) has developed a document that describes current clinical best practices for the diagnosis, medical and psychological management, and physical rehabilitation for people with CFS/ME.


http://cfs-facts.blogspot.co.nz/2012/11/january-2013-conference-primer-for.html
The 8th Invest in ME International ME Conference 2013
Date: 31st May 2013 in London
More details of the conference will be coming soon. (www.investinme.org)
Issues in Women's/Men's Health
Date: 15-17 February, 2013
Upon completion of this program, participants should be better able to: 1. Distinguish between ovulatory and anovulatory uterine bleeding and other menstrual abnormalities and select appropriate treatment options; 2. Explain the process of menopausal transition and describe the potential risks/benefits of HRT options, especially in relation to breast cancer and cardiovascular disease; 3. Describe the management of HPV infection and abnormal pap smear results; 4. Identify current strategies for diagnosing and managing osteoporosis, thyroid disorders and obese patients; 5. Discuss the symptoms, diagnosis and treatment of chronic fatigue syndrome; 6. Recognize and manage common symptoms of depression and other psychiatric disorders in women.
Location: The Cosmopolitan, 3708 Las Vegas Blvd. South, Las Vegas, Nevada, 89109
Organizer Details: Conference organized by Medical Education Resources
Address:1500 West Canal Court, Littleton, CO, 80120
Phone: (800) 421-3756 FREE
Website: http://www.mer.org

This website is also a useful resource if you are looking for conference details on a particular topic:

http://www.researchraven.com/conferences/category/sleep.aspx  
Please let us know about any forthcoming meetings in your area.

 




Book Reviews   

Chronic Fatigue Syndrome/ME    
By Rosamund Vallings
Published September 2012 by Calico Publishing, Auckland, NZ (books@calicopublishing.co.nz)
Often known as ‘ME’, Chronic Fatigue Syndrome is notoriously difficult to diagnose and treat, yet its effects are profound, and often prolonged and debilitating.

Dr Rosamund Vallings has been helping those with this condition for more than 40 years. Drawing on the latest international diagnostic guidelines, she describes the process for accurate diagnosis and the difficulties entailed.

She explains the illness and how it affects the body’s many systems and functions. She also provides advice on how to cope with the disorder on a daily basis and make the necessary lifestyle changes.

Never before have I had the pleasure of reading a book which has so successfully tackled a serious and controversial medical subject with such clarity of expression. Dr Vallings has produced a masterful work that reflects the essence of clear thinking. The comprehensiveness of her coverage – including health management, lifestyle ramifications and practical day-to-day advice – is extraordinary. It is the most user-friendly book I have ever read in the health care field.

Professor Simon Molesworth, AO, QC, Honorary Chairman, ME/CFS Australia 

This is simply the best book available on Chronic Fatigue Syndrome/ME. Dr Vallings informs and educates readers on every aspect of this often misunderstood illness. Everyone who has Chronic Fatigue Syndrome/ME should read this book – it will help them cope, and will improve their life.

Dr Ken Jolly, Medical Advisor, ANZMES
With no clearly defined diagnostic test or management strategies, Chronic Fatigue Syndrome/ME is a challenging condition for both the desperate patient and the busy doctor. Drawing on her many years’ experience treating this illness, Dr Vallings here provides a wealth of information, with particular insights and sound medical advice. This is an outstanding, comprehensive and authoritative reference guide for the patient, carer and doctor.
Christine Hunter, AHMF, Alison Hunter Memorial Foundation
 

 

 


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