Tuesday, December 22, 2009

IACFS/ME Newsletter

 

IACFS/ME Newsletter

Volume 2, Issue 6 • December 2009

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

             IACFS/ME
    BOARD OF DIRECTORS


    PRESIDENT
    Fred Friedberg, Ph.D.
    Stony Brook University
    Stony Brook, NY

    TREASURER / SECRETARY
    Kenneth Friedman, Ph.D.
    UMDNJ-New Jersey
    Medical School
    Newark, NJ

    Jonathan R Kerr MD,
    PhD, FRCPath
    St George's Univ.
    of London
    Cranmer Terrace, London

    Nancy Klimas, M.D.
    University of Miami
    School of Medicine
    Miami, FL

    Gudrun Lange, Ph.D.
    UMDNJ-New Jersey
    Medical School
    Newark, NJ

    Lee B. Meisel, MD, JD
    Epiphany Biosciences
    San Franciso, CA

    Teruhisa Miike, M.D.Ph.D
    Kohbe, Japan

    Staci R. Stevens, M.A.    
    University of the Pacific
    Stockton, CA

    Rosamund Vallings MB BS
    RD2 Papakura,New Zealand

    Suzanne D. Vernon, Ph.D.
    Charlotte, NC

 


CONTENTS

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

XMRV Retrovirus
CFS Advisory Committee Meeting
Survey Request: Send Us the Current Status of CFS/ME in Your Country
Education and Clinical Guidelines
H1N1 and CFS/ME
Medical Student Scholarship for CFS
New Contributors to the Newsletter
Member News

Book Review


IACFS/ME President's Letter

Dear IACFS/ME Members,

Since our August Newsletter, we've had perhaps the most eventful few months in the 25 year history of modern CFS.  In a case-control study published in the October 8th edition of Science, the retrovirus XMRV was linked to CFS/ME.  Principal Investigator Judy Mikovits and her colleagues (sponsored by Whittemore-Peterson Institute [WPI], National Cancer Institute and the Cleveland Clinic Foundation) have produced a level of excitement that only a potential smoking gun could do.  Yet I think caution is the order of the day as replication is required to determine the true significance of this finding.

The hope generated by XMRV combined with the frustration over the Center for Disease Control's (CDC) highly criticized 5 year CFS research plan led to an anything-but-routine meeting of the CFS Advisory Committee in Washington, DC (Oct. 29-30). The meeting was unusually well attended and included a fair number of professionals (including WPI co-founder Annette Whittemore) presenting testimony.   In this issue of the Newsletter, board member Ken Friedman presents more in depth reporting about the meeting which evidenced a rare consensus in the CFS community in opposition to the CDC's $25 million plan.

XMRV and the Safety of the US Blood Supply
The U.S. Department of Health and Human Services (DHHS) has formed an interagency scientific working group on XMRV to determine the prevalence of XMRV in the blood supply.  Given that 3.7% of healthy controls were infected with XMRV in the Science study, the issues of prevalence and possible transmission in the general population are of paramount concern.   This working group will also develop uniform testing procedures for XMRV, a critically important first step prior to large scale studies.  As yet, no timeline has been issued to reach their goals.  Because this group's priority is public health, not CFS mechanisms, they appear to have no particular bias about the role of XMRV in CFS.   Such an independent assessment of XMRV is a welcome development.  

Next Biennial Meeting:  Ottawa, Ontario, Canada;  2011
Ottawa will be hosting our next biennial International Research and Clinical Conference.  This will be our first major conference outside of the US, certainly an overdue development for an international organization.   Ottawa is a beautiful, moderately sized city at the junction of three majestic waterways. As stated on the Ottawa tourism website:  "A cosmopolitan yet surprisingly intimate city; a place where you can immerse yourself in Canadiana and culture".   We should have the exact dates of the meeting shortly.

If you or your organization is interested in sponsoring the conference please contact me (fred.friedberg@stonybrook.edu).

Thank you all for your support.

Happy Holidays!
Fred
Fred Friedberg, PhD
President
IACFS/ME


Message from Ros Vallings, newsletter editor

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

XMRV Retrovirus
The past 3 months have been busy and exciting for all those involved in the world of CFS/ME.  On 9th Oct, 2009 an announcement was made in Science that Dr Judy Mikovits and her team at the Whittemore Peterson Institute (www.wpinstitute.org) had found a xenotropic murine retrovirus (XMRV) linked to CFS/ME.  The study reported that over two thirds of patients had the XMRV in their white blood cells compared to only 4% of healthy controls. (www.sciencexpress.org/8October2009/page1
/10.1126/science.1179052
).  This immediately attracted worldwide attention, and as a result, there has been a snowballing of interest in the illness and along with that an upsurge in research.  The studies now need to be replicated in different centres around the world to validate these findings.  It is hoped too that more money will become available to further this research. 

CFS Advisory Committee Meeting
The timing of this potential breakthrough finding was excellent, as the CFS Advisory Committee was meeting in Washington on 29th-30th Oct 2009.  This committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).  This was a very important meeting and an opportunity for board members to present submissions for future directions.  The complete videocast can be viewed (http://www.hhs.gov/advcomcfs/).  Individual board members' submissions are attached here, with a summary by Dr. Ken Friedman attached here.  We will publish the recommendations as soon as they are available.

Survey Request: Send Us the Current Status of CFS/ME in Your Country
Ken Friedman is also forging ahead to enlarge the ambassadorial membership.  He has invited members and potential ambassadors from around the world to complete and return the survey attached here, which will give us some indication of what is going on in your area.  We can then collate your answers, and get a feeling for how IACFS/ME can be of benefit to members, and promote the sharing of concerns and ideas.  As yet we have not finalized establishment of the Clinicians Internet Group following on from the Reno conference, but meanwhile interested clinicians can still take part in the regular international discussion group established some years ago. (CFS-DOC@LISTSERV.ICORS.org). 

Education and Clinical Guidelines
Education and Clinical Guidelines are very much part of the IACFS/ME role.  This whole area needs review, and we have had useful suggestions from Dr. Alan Gurwitt for improving the CFS/ME education component of our website.  The guidelines committee will convene in the New Year and start working on this. Meanwhile suggestions are welcomed.  It has been suggested that we urgently need to be producing guidelines for management of H1N1 (Swine) flu in relation to CFS.  There is a good management overview written by Dr. Charles Shepherd on the British ME Association website. http://www.meassociation.org.uk/index.php?option=
com_content&view=article&id=1054&Itemid=215


H1N1 and CFS/ME
Thinking about H1N1 influenza is important at this time of year as the northern hemisphere winter approaches.  In New Zealand we had a number of cases during our recent winter flu season, and I have seen 2 cases of CFS following on from this infection, both teenagers.  I wrote up one case study, which is now on line ahead of print and to be published shortly in the Journal of Clinical Pathology (http://jcp.bmj.com/cgi/content/abstract/jcp.2009.071944v1).  Identification of the risk and correct management strategies are obviously important to prevent more CFS cases.  Vaccination against H1N1swine flu will soon be offered and we do need to be producing guidelines for its suitability for CFS patients.  If anyone is interested in becoming involved, please let us know.

Medical Student Scholarship for CFS
The New Jersey Statewide Chronic Fatigue Syndrome Medical Student Scholarship Program was judged recently and the essays submitted were of a high quality.  The winning essay by Madeleine Sterling is attached and can be downloaded here, together with an overview by Ken Friedman about the NJ CFS Association and the scholarship programme.  This provides a wonderful opportunity for promoting interest and education at the student level.  It is an idea that could be encouraged at other universities. 

New Contributors to the Newsletter
During the past few months we have been delighted to receive some contributions to this newsletter from members. Three useful articles are attached: Frank Twisk (Belgium) has sent us a review on CBT and GET in ME/CFS published in Neuroendocrinology Letters, Vol 30 No 3, 2009 (download PDF file here);  Annedore Hoeck (Germany) has sent a version of her article on Vitamin D deficiency in relation to CFS (download PDF file here) and Laurence Felker (Reno) has sent in an article looking at Potential Causal Retroviral Paths in Neuro-immune Stress Disorders (download PDF file here).  These articles all provide a useful basis for further discussion.

In addition to these articles sent in by our members, I have found other articles on related topics which may be of interest and use clinically:  (full references are attached here)

The doctor-patient relationship in chronic fatigue syndrome: survey of patient perspectives
Neuraminidase inhibitors for treatment and prophylaxis of influenza in children.
Undesirable drug interaction in palliative medicine 
Increased D-Lactic Acid Intestinal Bacteria in Patients with CFS
A review of Complementary and Alternative Approaches to Immunomodulation
Assessment and Management of Medically Unexplained Symptoms

These articles should be read critically, and comments for future newsletter discussion will be welcomed.

Member News
Dr. Ellen Goudsmit has been elected a Fellow of the British Psychological Society.  A letter from her is attached here.

Board member Staci Stevens reported that her university department CFS Journal club had been visited by seven senior faculty members and students.  It is hoped that CFS will be viewed in a more positive light in an academic setting. (http://web.pacific.edu/x508.xml)

Dr. Peter Snow the New Zealand GP who first described Tapanui Flu and presented at several IACFS conferences, died in 2006.  He has recently been honoured with a community memorial in Tapanui
(http://www.odt.co.nz/the-regions/southland/38878/
long-serving-district-doctor-be-honoured
).

I have reviewed below the excellent book written by our president Fred Friedberg.  If any of you find books that can be of interest to our members, please send in your reviews for publication in future newsletters.

Please write to us also with your ideas, comments, views, research in your country etc. (Vallings@xtra.co.nz).  We also welcome abstracts for consideration for the Bulletin (greg@iacfsme.org).  If you are interested in representing your country for IACFS/ME please contact Ken Friedman (friedman@umdnj.edu).  If you have information about forthcoming conferences or meetings in your area, please let us know.

Sincerely,
Ros
Rosamund Vallings, MB, BS


Date for your diary:
5th Invest in ME International ME/CFS Conference – 24/5/2010 - London
http://www.investinme.org:80/IIME%20Conference%202010/
IiME%202010%20International%20ME%20Conference%20Home.htm


Book Review  

Fibromyalgia and Chronic Fatigue Syndrome
By Fred Friedberg, PhD

New Harbinger Publications, Oakland, CA. 2006

This excellent book focuses on seven proven steps to less pain and more energy.  There is a good initial overview about the illness and a look at possible causes and lifestyle factors, with a review of some of the psychological styles that can help or hinder management of this illness.

The seven step approach is logical, and based on a combination of good common sense and sound psychological principles.  The steps cover relaxation, sleep, activity, dealing with anger, relieving worry and guilt, experiencing pleasurable feelings and getting support from others.  Making changes when change seems impossible is a helpful and positive strategy.  Finally there are some chapters on how and why medical interventions may not help.  The book emphasises an approach based on healing rather than absolute cure. Included are some case studies as examples using the principles outlined.

This is a very readable and useful manual which I would recommend for health professionals and patients alike.  It would be appropriate also for help in dealing with other chronic illnesses. 

—Ros Vallings, MD

 


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