Spring 2006

May 1, 2006

Spring 2006 
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

Letter from the President

Well, its been a busy time for the IACFS. Yes, the ACFS—it'sofficial, and this international organization is stretching its wings,making some changes, and working on any number of projects. We have twonew board members, Fred Friedberg and Gudrun Lange, both well known fortheir scientific and clinical contributions to our field. Fred hastaken on some pressing membership issues, and Gudrun hopes to bringthe IACFS a peer review journal!

We have a number of projects underway:
1) Pediatric Case Definition: with Lenny Jason's leadership, thecommittee completed their work, and have submitted a proposed casedefinition for publication.
2) Journal: The publications committee, with the added energy ofour new board member, Gudrun Lange, is contacting publishing houses andpursuing the possibility of an IACFS-sponsored peer review journal;hopefully more on that in time for our January conference.
3) Membership: Our new board member Fred Friedburg has worked withthe membership committee to expand our international membership,contacting every published author in recent months with invitations tojoin our organization. Jill McLaughlin is spearheading a membershipdrive among the patient and advocacy community. I am hoping that thepatient and advocacy community will respond warmly to this initiative,and support the only professional organization actively working tobetter understand and treat CFS.
4) Webpage: In addition to his other duties as chair of thepublications committee, Lee Meisel has volunteered to improve ourwebpage and is developing a bibliography of key CFS publications for ourmembership. I am sure he would welcome your suggestions for our newand improved web page.
5) Advocacy: I have met with Vivian Penn , Eleanor Hannah andTerry Hoffeld to discuss funding issues. Dr. Penn has been veryopen and receptive to our discussions. Certainly the success of the recentRFA, with more than 30 proposals, many from investigators new to ourfield, demonstrated that the investigators and projects are out there.By setting aside a sum of money, the usual 4 or 5 applications per roundgrew to more than 30. This is precisely what was needed, and puts torest this concept that there just isn't enough interest in the field.I intend to continue discussions with Dr Penn and her staff, and Iwould welcome your comments.
6) Conferences: Birgitta Evengard is chairing the professionalconference planning committee, and I am sure you will be very pleasedwith the conference agenda as it is shaping up. You can read more aboutit in this issue. The patient conference has taken a new tack; inaddition to the day long meeting, there is a going to be a leadershipand advocacy day long workshop, which I hope will bring advocacyleadership from around the world together for the first time. Ft.Lauderdale in January with new and old friends—it should be a memorableconference.

Enjoy the newsletter, start thinking about an abstract or two, and planto spend some time with all of us in Ft. Lauderdale, next January!

—Nancy Klimas, M.D.
President, International Association for Chronic Fatigue Syndrome (IACFS)

Medical Literature Review
By David S. Bell M.D., FAAP; Board Member IACFS

Vernon SD, Whistler T, Cameron B, Hickie I, Reeves W, Lloyd A. Preliminary evidence of mitochondrial dysfunction associated with post-infective fatigue after acute infection with Epstein-Barr virus. BMC Infectious Diseases 2006;6 www.biomedcentral.com/1471-2334/6/15.

Pilot study of gene expression carrelates of post-infectious fatigue following infection with EBV in 5 subjects compared to 5 HLA-matched controls. Peripheral blood mononuclear cells harvested at diagnosis, every 2 weeks for 3 months then every 3 months for a year. Extracted RNA hybridized to microarrays spotted with 3,800 oligonucleotides.

Gene transcription patterns following acute EBV infection in patients who developed prolonged fatigue differed from the matched controls, and some of these genes expressed differently related to immune function. Overall, gene expression during the acute illness was different for twenty three genes, and eight of these remained different after 6 months in cases. Four genes were more highly expressed in controls than post-viral cases.

Of the genes expressed differently from controls, and 12 related to mitochondrial functions “including fatty acid oxidation, apoptosis, DNA repair and mitochondrial membrane.” The authors concluded that despite a small number of genes evaluated, and small number of cases, “our preliminary results implicate mitochondrial dysfunction as a plausible physiologic perturbation in post-infective fatigue.”

This article is one of the first in an exciting era where the presence and/or activity of specific genes can be assessed to evaluate the presence of specific disease states, or, in the future, predict the later appearance of specific disease states. While this study is preliminary, and this science is in its infancy, a few conclusions can be drawn.

First is that persons who develop post infectious fatigue after EBV react differently from controls at the time of the infection, and differences persist into the six month and beyond period. And secondly, there is a tantalizing link between the immune activation and mitochondrial dysfunction, an area that has been hypothesized for years but never examined with a reliable technology.

The authors stress that this is a preliminary study. This study is part of the results from Dubbo, Australia study and it will be of great interest to see if the genomics seen in these 5 patients following EBV infection are at all similar to the genomics of persons following other infections such as Lyme or parvovirus. Even more interesting will be the population studies. It is likely that there will be several patterns of gene expression.

Of great concern is the possibility of funds being cut back for the CFS projects. Ah, work to be done in the future…..

IACFS Initiative to Develop Pediatric Diagnostic Criteria

By David S. Bell M.D., FAAP; Board Member IACFS

One of the more important difficulties facing the study of ME/CFS in children is the lack of pediatric specific diagnostic criteria. Adult criteria are most commonly used in pediatric settings but these criteria may not be appropriate for children and adolescents. In all CFS case definitions, no alternative condition can explain the activity limitation and/or symptom pattern. However variations exist in the different adult criteria as to the length and severity of the activity limitation, the severity of the symptoms, the relative importance of different aspects of the symptom pattern, and whether the symptoms began suddenly or insidiously. The current criteria specifically exclude lifelong fatigue, ensuring that young children are not counted in surveys of chronic fatigue.

A case definition specific for children and adolescents is essential to further the research in these conditions. Lack of ability to diagnosis young people with CFS or other forms of unexplained fatigue has caused medical practitioners to doubt the presence or importance of the symptoms. Inability to make a diagnosis may suggest to the pediatric patient and family that the symptoms are trivial, unimportant or even imaginary. This social attitude, prevalent at the current time, erodes the self confidence and health identity of the pediatric patient at a critical time of identity formation.

For this reason several pediatric researchers around the world have begun the process of developing pediatric criteria. The paper has been accepted for publication, and will be presented at the January 2007 IACFS conference in Fort Lauderdale, Florida. We hope to have extensive discussion of data and practability, and would encourage as much participation as possible. A brief synopsis of the submitted paper is as follows:

Title: A Pediatric Case Definition for ME/CFS

Authors: IACFS Pediatric Case Definition Working Group. (Jason, L.A., Bell, D., Rowe, K., De Meirleir, K., Jordan, K., Lapp, C., Gurwitt, A., Miike, T., Torres-Harding, S., & Van Hoof, E.)

Objectives: For a diagnosis of chronic fatigue syndrome (CFS), most researchers use criteria that were developed by Fukuda et al. (1994), with modifications suggested by Reeves et al. (2003). However, this case definition was established for adults rather than children. A Canadian Case Definition (ME/CFS; Myalgic Encephalomyelitis/CFS) has recently been developed, with more specific inclusion criteria (Carruthers et al., 2003). Again, the primary aim of this case definition is to diagnose adult CFS. A significant problem in the literature is the lack of both a pediatric definition of ME/CFS and a reliable instrument to assess it. These deficiencies can lead to criterion variance problems resulting in studies labeling children with a wide variety of symptoms as having ME/CFS. Subsequently, comparisons between articles become more difficult, decreasing the possibility of conducting a meta-analysis.

Methods: The International Association of Chronic Fatigue Syndrome Pediatric Case Definition Working Group was formed in 2005, and worked for 6 months to develop a ME/CFS pediatric case definition.

Results: This panel discussion presents recommendations developed by the International Association of Chronic Fatigue Syndrome Pediatric Case Definition Working group for a ME/CFS pediatric case definition. For a diagnosis of pediatric ME/CFS, the following five classic ME/CFS symptom categories must occur: 1) Post-exertional malaise; 2) Unrefreshing sleep, or disturbance of sleep quantity or rhythm; 3) Myofascial pain, joint pain, abdominal and/or head pain; 4) two or more Neurocognitive manifestations, and 5) at least one symptom from two of the following three subcategories: a. Autonomic manifestations, or b. Neuroendocrine manifestations, or c. Immune manifestations. After a presentation of the criteria for this new pediatric case definition, the panel will provide case studies in which this new definition has been used. In addition, data collected from a newly developed instrument tapping these criteria will be presented.

Conclusions: It is hoped that this pediatric case definition will lead to more appropriate identification of children and adolescents with ME/CFS. The rapid, accurate identification of cases of ME/CFS followed by comprehensive and appropriate support and treatment might increases chances of recovery for all children and adolescents with this debilitating illness.

Call for Nominations for the Governor Rudy Perpich Memorial Lectureship Award and for the Junior Investigator Award

By Charles Lapp, M.D.

The Board members of IACFS are seeking nominations for the Rudy Perpich Award. Nominated individuals should be well known in the CFS field and must have made considerable contributions in the research arenas. Previously, the Assistant Secretary of HHS (Phillip Lee) received the award. We are also seeking nominations for the junior award; it can be a recent M.D. or Ph.D., who is engaged in CFS research. The Perpich award recipient receives a plaque and $300 for additional expenses, and IACFS covers travel and accommodations. The Junior Investigator Award recipient receives $1000 to cover expenses. Meals for both awardees are covered by the IACFS. Awards will be presented as part of the banquet program at the IACFS Conference, January 11-14, 2007 in Fort Lauderdale, Florida, USA.

Please send your nominations to: [email protected]
* Nominations should include the name, credentials and contact information for the nominated individual and paragraph explaining the reason for the nomination.

Charles W. Lapp, M.D.
Hunter Hopkins Center
10344 Park Road #300
Charlotte NC 28210
Ph 704-543-9692
[email protected]

Previous Rudy Perpich awardees
Dedra Buchwald, M.D. (2004)
Daniel Peterson, M.D. (2003)
Tony Komaroff, M.D. (2001)
Phillip Lee, M.D. (1998)
Alexis Shelokov, M.D. (1996)

Previous Junior Investigator awardees
Susan Torres-Harding, Ph.D. (2004)
Dane B. Cook, Ph.D. (2003)
Richard Herrell, Ph.D. (2001)
Pascale De Becker, Ph.D. (1998).

Previous Special Service Awards
Judy Basso and Christine Hunter (2004)
Orvalene Prewitt (2003)
Kim Kenney (2001)

Big Jump in IACFS Website Hits After New Mailing

By Fred Friedberg, Ph.D. and Leonard A. Jason, Ph.D.

In December 2005, 600 membership invitations were sent out to international authors of peer review articles on CFS. Since then, eight new members (including a new lifetime member) have joined IACFS. In addition, the impact of the mailing on web traffic to the IACFS website has been very encouraging. The following figures are the number of "Unique Visitors" to the website:

November 05: 2,397
December 05: 2,704 (mailing sent out)
January 06: 4,207
February 06: 4,604
March 06: 5,232

The jump in hits starting in January is remarkable. Once we have upgraded the website, a new invitational mailing will go out to about 800 U.S.-based peer review authors. Clearly, there are many interested CFS researchers who we can reach and encourage to join IACFS.


Call for Papers

8th International IACFS Conference on Chronic Fatigue Syndrome, Fibromyalgia and other Related Illnesses
Professional Section January 12-14, 2007
Bahia Mar Beach Resort, Ft. Lauderdale, Florida, USA

The Conference Planning Committee of the International Association for Chronic Fatigue Syndrome (IACFS) invites potential presenters to submit abstracts for our next biannual meeting which will be held in Ft. Lauderdale, Florida, January 12-14, 2007. Segments will focus on integrative themes including different aspects of Chronic Fatigue Syndrome, Fibromyalgia and other Related Illnesses presented in the context of fatigue, pain, sleep, pediatrics, cognition & brain function. There will also be lectures on “latest research”, “newest clinical protocols”, “what the genes can teach us” and “CFS state of the science / art; where does the research go from here?” Papers will be reviewed by the IACFS Conference Planning Committee for selection as an oral lecture, short oral presentation or poster presentation. Attendees to IACFS Conferences are primarily medical clinicians and academic researchers at the medical professional level; papers should reflect this level of experience and expertise. It is anticipated that this event will be accredited for continuing medical education for physicians. Papers selected will be published in the conference syllabus.


  • Abstracts should be non-commercial and focus on one or more of the areas indicated above.
  • Microsoft Word is preferred for electronic submissions, but could be submitted as the body of an e-mail.
  • One page in length (single spaced, 12-point font), including all authors with presenting author listed first and in bold, institution(s), and include Objectives, Method, Results and Conclusion.
  • Include presenting author's full name, academic credentials, mailing address, city, state, zip code and e-mail address.

Submission Process:

  1. Please e-mail abstracts to [email protected] no later than August 1, 2006.
  2. Presenting author will be contacted in October 2006 and advised if paper(s) is / are approved, with the type of presentation specified.
  3. If selected for either an oral lecture or short oral presentation, presenting author will be required to provide a Curriculum Vitae and complete necessary forms as directed in order to comply with AACME requirements for accreditation. Authors will be advised of the date and time of their presentation.
  4. If selected as a poster presenter presenting author will be provided with specifications for presentation and display.

Questions regarding papers or the submission process should be directed to IACFS Administrative Office, Attention: Greg Fillmore, [email protected], phone 847-258-7248.


New Design and Content for IACFS Website

By Lee Meisel, M.D., J.D.
Chair, Publications Committee

The IACFS has embarked on a project to completely overhaul its website to include new features and content. By the time of publication of this newsletter, many of the new features will have already been implemented with others still to come. We welcome our members and the general public to visit our website with regularity to fully take advantage of all the new information that will be presented as it comes hot off the press.

Some of you may have noticed that the IACFS has a new web address (www.iacfs.net) to go along with our new name. During the transition period leading up to our January 2007 conference in south Florida and for a period of time thereafter, both the old web address (www.aacfs.org) and our new web address will get our readers to the IACFS home page. Eventually, however, our old web address will be de-activated.

If you take a close look at the membership portion of our website, you will notice that the membership categories consist of professional, associate and supporting members. Perhaps the biggest change in the structure of the new website is that there are now two levels of access to information on the website: “restricted” access for the general public and “unlimited” access for all of our members regardless of the membership category. Before an IACFS member can gain unlimited access, the member must set up a personal password either via our website or by phoning our administrative office.

Decisions about restricting certain types of website information access to “members only” are evolving as a work in progress. Generally speaking, there will be two types of restricted information. The first type will be our membership lists. Unless a member opts out for personal reasons, member names and contact information will be listed on the website for access by “members only” on one of three lists: professional members, associate members and patient support groups.

The second type of restricted information will consist of a variety of categories, including the newsletter, information archives, technical patient management information, and diagnostic and treatment protocols.

Changes in content will be constantly evolving as new scientific and other general information becomes available. Examples of new content that may be added over time include archives of previous newsletters, conference agendas and conference summaries, abstracts of CFS related scientific publications, answers to frequently asked questions (FAQs) by patients and their families, news about CFS conferences and meetings, links to medical professional and not-for-profit websites that patients can use as a resource to help them seek out appropriate medical care, and the various CFS case definitions and related commentary by the experts.

Past Presidents Sub-Committee Formed


IACFS has formed a sub-committee of past presidents to guide and advise our current board of directors on a variety of issues. These are distinguished industry professionals with experience in building and running a non-profit organization such as ours and their advice will be extremely valuable as we move forward. The committee will be chaired by our current President, Nancy Klimas, and our Vice President, Leonard Jason, and will include Anthony Komaroff, Walter Gunn, Paul Levine, Sudhir Gupta, Dedra Buchwald, Ben Natelson and Dharam Ablashi.

IACFS Fund Raising Sub-Committee Seeking Member Involvement


IACFS will be creating a Fund Raising Sub-Committee to assist in funding our organization. We would like any member interested in becoming a member of this committee to contact IACFS Vice President, Dr. Leonard Jason at [email protected].