ME/CFS Primer/Education Bulletins Volume 16, Issue 2 - 2008
 

Volume 16, Issue 2 - 2008

May 1, 2008
 
 
Volume 16, Issue 2 2008 
Co-Editors
David S. Bell, M.D. & Rosamund Vallings, MNZM, M.B., B.S.
Managing Editor
Greg Fillmore
Editorial Advisory Board
Leonard A. Jason, Ph.D. • Fred Friedberg, Ph.D. • David S. Bell, M.D.
Rosamund Vallings, MNZM, M.B., B.S. • Gudrun Lange, Ph.D

 

 

Volume 16, Issue 2 • 2008

Table of Contents

Letter from the President
Nancy Klimas, M.D.
Editorial
IACFS/ME Bulletin Editorial Advisory Board
Living with a Parent with Chronic Fatigue Syndrome
Julie G. Donalek, R.N., Ph.D.
ME CFS Conference - May 2008 - Cambridge, UK
Rosamund Vallings, MNZM, MB, BS
The Glutathione Depletion–Methylation Cycle Block Hypothesis for CFS/ME, and Implications for Treatment
Richard A. Van Konynenburg, Ph.D.

Skepticism in CFS/ME
Rosamund Vallings, MNZM, MB, BS

 Announcements

IACFS/ME Biennial 2009 Conference - Reno, Nevada

Call for Papers – IACFS/ME Biennial 2009 Conference

Call for Award Nominations

Call for Board Nominations

International Conference on Fatigue Science, Okinawa, Japan, September 3-5, 2008

CFS/ME Part I and Part II for Family Physicians, General Internists, Rheumatologists, and Psychiatrists

The 1st Alberta Interdisciplinary Research Symposium and Discussions


Letter from the President
Nancy Klimas, M.D.

International Symposium on Viruses in CFS and Post-Viral Fatigue

The IACFS/ME joined with the HHV6 Foundation to co-host the International Symposium on Viruses in Chronic Fatigue Syndrome and Post-Viral Fatigue, and it was a great meeting! On the heels of the HHV-6 Foundation’s 6th International Conference on HHV-6 and 7, this satellite meeting brought together the globe’s experts on chronic viral infections with CFS-like characteristics.


Editorial

We are very pleased to introduce the next issue of the Bulletin, which is becoming more and more like a journal. As some of you might know, the Journal of Chronic Fatigue Syndrome was sold by Haworth Press to Taylor & Francis, and a decision was made by this new publisher to cease publication of the Journal of Chronic Fatigue Syndrome. The last issue of this journal will be coming out during the summer. Because of this development, our Bulletin takes on even more importance for the field.


Living with a Parent with Chronic Fatigue Syndrome
Julie G. Donalek, R.N., Ph.D.

DePaul University Department of Nursing

Individuals experiencing ME-CFS are often parents. Yet the responses of family members to the parent’s illness have not previously been explored. In this study, eight children living or having lived in a family with a parent with ME-CFS talked about their lives. They described attempting to make some sense of their parent’s illness, at times with limited information and support, attempting to deal with decisions around telling others outside the family, all while carrying increased responsibility within the family. Suggestions are made for assistance to these children and support for the family as a whole.

ME CFS Conference - May 2008 - Cambridge, UK
Rosamund Vallings, MNZM, MB, BS
New Zealand ME/CFS Association

On May 6, 2008 I attended the International Conference on ME/CFS Biomedical Research at Hinxton, Cambridge, UK. 130 people attended and cutting edge research was presented from around the globe. The conference was sponsored jointly by ME Research UK and the Irish ME Trust. Sadly, Vance Spence, who had organised the conference and was going to give an introductory overview, was too ill to attend.   


The Glutathione Depletion–Methylation Cycle Block Hypothesis for CFS/ME, and Implications for Treatment
Richard A. Van Konynenburg, Ph.D.

Livermore, CA

At the January, 2007, IACFS/ME Scientific Conference in Fort Lauderdale, I presented a poster paper describing a new biochemical hypothesis for the etiology, pathogenesis, pathophysiology and symptomatology of CFS/ME, which I call the “Glutathione Depletion—Methylation Cycle Block (GD—MCB)” hypothesis. This hypothesis is able to explain many of the biochemical and symptomatic features of CFS/ME in a straightforward, specific and testable manner. 

Since the conference, I have continued to develop this hypothesis, and a clinical research study using a treatment protocol based on it is currently underway. The GD--MCB hypothesis has not yet been described in a peer-reviewed publication, and controlled clinical trials of treatment based on it have not yet been performed. Nevertheless, I believe it is in the best interest of the CFS/ME community for IACFS/ME members to receive an update on this hypothesis and the implications for treatment at this time.


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

One of the hardest things for those with CFS/ME has been the issue of “no-one seems to believe I am ill”.  Fortunately I am hearing this less and less these days because I think this illness is becoming better understood and validated by current research. ... thinking did change, as we entered the era of mind-body medicine. ... Thankfully with the emergence and development of sciences such as immunology, genetics and biochemistry, illnesses such as CFS/ME are becoming validated and acknowledged by the wider medical and research community.  ... It is just like any other illness with physical and mental aspects. So why do patients still have problems with convincing doctors and others in their lives that they have a “real” illness and are seriously afflicted?  


Announcements

IACFS/ME Biennial 2009 Conference

The 9th International IACFS/ME Conference, "Developing Interdisciplinary Collaborations," will be held March 12-15, 2009 at Peppermill Resort, Reno, Nevada.


Call for Papers - IACFS/ME Biennial 2009 Conference

The Conference Planning Committee of the International Association for Chronic Fatigue Syndrome/ME (IACFS/ME) invites potential presenters to submit abstracts for our next biennial meeting which will be held in Reno, Nevada, March 12-15, 2009.

Call for Award Nominations

The following awards will be given out at the 2009 IACFS/ME conference to be held in Reno, Nevada.


Call for Board Nominations

Anyone wishing to nominate someone to the IACFS/ME Board is urged to send an e-mail to current board member Dr. Cindy Bateman care of lbateman@pol.net.


International Conference on Fatigue Science, Okinawa, Japan, September 3-5, 2008

We are pleased to inform you of International Conference on Fatigue Science (ICFS) 2008, which will be held in Okinawa, Japan, from September 3 to September 5, 2008 (This Year!!).


CFS/ ME Part I and Part II for Family Physicians, General Internists, Rheumatologists, and Psychiatrists
  * Part I: Diagnosis and Assessment of Patients with CFS/ME
Friday, October 24th, 2008 - 1:00 - 4:45 pm - Dr. Clara Christie Theatre
  *Part II: Clinical Management of CFS/ME
Friday, November 7th, 2008 - 1:00 - 4:45 pm - Libin Lecture Theatre

The 1st Alberta Interdisciplinary Research Symposium and Discussions
Saturday, November 8th, 2008, 9:00 am - 4:30 pm
Public Lecture: Sunday, November 9th, 2008
Libin Lecture Theatre, University of Calgary


 

 



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