ME/CFS Primer/Education Bulletins Winter 2006-7
 

Winter 2006-7

December 1, 2006
 
 
Winter 2006- 7  
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

 

 

Table of Contents


Letter from the President

presidentDidn't we all have a fine time! Yes, both the patient and the professional conferences were great successes, and I hope all of you who attended have come away with newly rejuvenated enthusiasm. Certainly the conference demonstrated considerable progress in the field. It was a jam packed meeting, and it appeared that very few people found any time to enjoy sunny (and windy) South Florida, as the auditorium seemed full for each and every session.

In this issue you will find conference highlights, with additional information being posted on the Web site later this week. The integrative theme came off well, with sessions looking across disciplines to better understand the pathogenesis of CFS. We saw the fruits of painstaking lab. So much of the progress rested on all of the investigators use of a clarified case definition and common instruments to describe the illness and its severity. All of the not so glamorous tools developed through a series of CDC workshops that are now widely used, allowing clinical trials work and basic science to move forward with speed. The conference did highlight glamorous new technologies from neuroimaging techniques to genomics and proteomics. Methodological advances in subgrouping strategies were also apparent in the clinical trials sessions, both in the antiviral studies and autonomic interventions. Dr. Vivian Pinn and Dr Eleanor Hanna gave us advice on NIH funding strategies, and encouraged investigators to develop international collaborations.

I was also excited to see young investigators presenting fresh work and dozens of posters that deserved main stage time. But the Japanese group stole the show, with simply stunning scientific advances across the spectrum of disciplines. Dr. Watanabe and his colleagues should be rightfully proud of all that they are accomplishing in this field. Not to be outdone, the HHV6 Foundation sponsored a post conference workshop that brought chronic viral reactivation back into the center stage, opening the door to antiviral strategies in clinical trials work, which we hope to see presented at our next gathering. If you missed it, you may have to go to the Web site and purchase the DVD!

Behind the scenes, there were discussions on the name change, which morphed into more discussions, and the IACFS board put the question to the membership.

-Sincerely,
Nancy G. Klimas, M.D.


A Retrospective on the 8th IACFS Conference by Virginia Teague

This year's IACFS conference in Fort Lauderdale at the Bahia Mar Resort offered attendees an innovative format focused on the theme of interdisciplinary research and integrative care. The conference began with a two-day session focused on the needs of patients. Patient advocates from international advocacy organizations on CFS, FM, and related illnesses met for the first time to share their ideas in workshops on fundraising fundamentals, empowerment, and media training. Co-hosted by P.A.N.D.O.R.A (Patient Alliance for Neuroendcocrineimmune Disorders Organization for Research and Advocacy, Inc.), these sessions, attended by 350 patients and 222 professionals, provided a unique opportunity for patients to meet and talk with leading international researchers and clinicians.

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The 8th IACFS Conference: Summary By Rosamund Vallings, MB, BS

I was privileged to attend the 8th IACFS conference in Fort Lauderdale, Florida from 10-14th January 2007. There was a larger number of presentations and attendees than at any previous CFS conference, and the quality of presentations and research achieved in the past 2 years was indeed exciting. The conference was ably organized and hosted by Dr Nancy Klimas, and thanks must go to her. This conference combined the research and clinical work which thus gave a good overview of all aspects of the illness. The days were long and intensive, but most people (even those with CFS) managed to stay the distance and there was so much to learn. The conference was truly international with participants and presenters from around the globe.

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Origin of AACFS: A brief report by Dharam Ablashi and Orvalene Prewitt, co-founders

It was May 20, 1988 when Orvalene Prewitt the President of National CFS Association Kansas City, MO invited me to present and moderate a mini conference called “Heart of America Seminar on CFS†, which was well attended by clinicians and patients at that time I was at NCI/ NIH and we just discovered HHV-6 (June 1986). During the seminar, Mr. Edward Taylor from Tulsa, OK approached me to say that he would like to offer $15,000 for a lab for CFS research and whether I would recommend any person or have ideas on how to accommodate the offer, I said let me think about it. Following the reception after the sessions a few of us met informally during dinner to express and exchange our ideas on CFS and to initiate a national advisory council. After a long discussion, it was unanimously recommended that the possibility of CFS National Advisory Council (NAC) be explored which should be composed of qualified and well respected basic research scientists, physicians, epidemiologists, representative of the national CFS patient associations, individuals willing to raise funds and those willing to handle administrative, business and political aspects of this organization.

Those who attended this meeting included Paul Levine from NIH, few other investigators who participated in the seminar, CFS group leaders and a few patients. This group strongly endorsed the formation of this type of organization on CFS that would bring together under one roof the CFS basic science researchers, practicing physicians in CFS and patients groups to present, discuss, formulate plans as to how we could promote science that will help the patients. Both Orvalene Prewitt and I offered our services and we took the task to get in touch with scientists, clinicians and patient group leaders to ask their opinions about creating CFS NAC. Practically everybody we talked to embraced the idea for this type of organization.

The first meeting of National CFS Advisory Council was held on February 10, 1989 at the Holiday Inn in Gaithersburg, MD with the financial support of Edward Taylor. In attendance were Drs. Dharam Ablashi (NCI), Paul Levine (NCI), Tony Komaroff (Harvard University), Paul Chaney (Nalle Clinic, SC), James Jones (Jewish Hospital, Denver), and Ann Schneberg (NIH). Others attending were Orvalene Prewilt, Edward Taylor (Tulsa, Oklahoma), Dr. Susan Spring (NCI). Barry Sleight and Edward Taylor were responsible for organizing this meeting. Drs. Nabah Abdou of the University of Kansas, Jim Jones and Ann Schuberg offered to help with input from Steve Strauss of NIAIDS/NIH. Those professionals who could not attend the meeting were Drs. Mark Loveless, Walter Gunn, William Reeve, Daniel Peterson, Nancy Klimas, Deidra Buchwald, David Bell, Susan Levine, Charles Lapp, Peter Bahan, Sudhir Gupta, but they gave their moral support to create CFSNAC. The patients CFS Association Group leaders that could attend the meeting were highly supportive of CFSNAC. To include a few were Mark Iverson, Kim Kenney, Judy Basso, Bob Landou, Lisa Nordon and Claudia Carver.

At this meeting we elected Tony Komaroff as President, Paul Cheney as Vice President, Orvalene Prewtlt as Secretary and Edward Taylor as Treasurer. The corresponding office for the advisory council was voted upon to be at 12106 East 54th Terrace, Kansas City, MO 64138. Ruby Nakamara from Wisconsin CFS Association and Edward Taylor wanted a newsletter but the idea was considered premature. The functions of the advisory councils were discusses and outlined and participants were eager to get started. Ed Taylor, Dharam Ablashi, and Tony Komaroff proposed that we make plans to charter the organization as a non-profit entity and Ed took the task of looking into it. The National CFS Advisory Council Name was changed to American Association CFS (AACFS) and it was chartered in the state of Oklahoma on December 23rd 1992 (see the certificate). The initial board members included Dharam Ablashi, Dedra Buchwald, Paul Cheney, Walter Gunn, Jim Jones, Tony Komaroff, Nancy Klimas, Paul Levine, Jay Levy, Governor Rudy Perpich, Mark Loveless, William Reeves and John Renner. Tony Komaroff served as the first President of this organization and Ed Taylor, Orvalene Prewitt and Paul Cheney served as the first officers.

In the early days of AACFS it was Ed Taylor who handled the finances and continued to provide financial assistance for the administrative office. Orvalene Prewitt and I had fulfilled our dream and the dreams of many many supporters. Thus AACFS became the first CFS professional organization in the world that would fulfill the dream of the professionals and patients, and stimulate CFS research, treatment and spread the word around about CFS in state agencies and in Washington DC. It would have never happened without the efforts of Ed Taylor, patients and their group leader and professionals. It was Governor Perpich who initially did the leg work to approach Congress in Washington DC about CFS.

I am glad I was a part of this process and proud to say we did it. This is your organization and it would not go anywhere unless we all i.e. researchers, clinicians, and patients support it.

Thank you Dharam V. Abalshi Co-Founder of AACFS Past President

Presented at the 8th International Conference on CFS/FM Fort Lauderdale, FL January 12-14, 2007


8th IACFS Conference: Brief reviews of selected posters and presentations by David S. Bell, MD

The conference presented an enormous amount of exciting, good, new, relevant information on virtually all aspects of the illness. In this section I would like to present brief overviews and comments of some of the papers and posters, along with comments by the reviewers as to implications and relevance. I am reluctant to undertake this project because there were so many excellent papers and a review this short does them a dis-service.

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About the Late Gov. Rudy Perpich and Formation of the Perpich Memorial CFS Award by Dharam Ablashi, co-founder of AACFS (IACFS)

I would like to acknowledge the support of Ms. Judy Basso and Ms. Mary Sue Perpich (the Governor's daughter) for their help in providing me a history of Gov. Perpich's achievements and what he did for CFS, not only in his own state of Minnesota but also in Washington, DC and in governors meetings.

I remember Gov. Perpich talking to me several times to tell me that his son Rudy Perpich Jr. had CFS and his daughter Sue had FM. This happened before he was spreading the word around about CFS in his own state of Minnesota. He wanted to find a suitable cure for these conditions. He wanted to help promote CFS awareness and stimulate research in the cause and prevention of CFS.

Rudy Perpich received his DDS from Monquette University in 1954 and he was a man of many talents and ambitions. Judy wrote to say that his leadership in the early CFS recognition was exceptional. He initiated resolution addressing CFS needs at the February 1990 National Governors Association (NGA) meeting that took place in Washington DC. It passed unanimously largely due to his efforts and was the only the second such resolution regarding a health condition, the first was AIDS. Governor Perpich was considered by many to be a great educator and he was the longest serving Governor in Minnesota history.

Perpich issued an official proclamation that declared March 4-10, 1990 as the first CFS awareness week across Minnesota and he encouraged other fellow Governors to do the same in their states. He made several pubic announcements for radio and television stations. His staff established a media hotline related to the NGA resolution, which resulted in a flurry of coverage across Minnesota and the nation. The MN Health department helped develop and distribute a brochure targeted to patients and their families and assisted support groups of MN by distributing their literature to Board of Health American Academy of Family Practice in Minnesota. He was one of the generations of heroes.

He made several moves to spread the word around about CFS to his friends and associates in Washington DC. He arranged for Dr. Phillip K. Peterson, infectious disease specialist from University of Minnesota and Hendipin County Medical Center to present testimony on behalf of CFS to the US Congress and he personally appeared before the Senate Appropriation Subcommittee to request more research funds be allocated.

With such accomplishments, achievements and his dedication, the AACFS Board requested Gov Perpich to serve on its board to which he gladly accepted. I remember during board meetings he was quiet and a good listener. Privately he had several discussion sessions with Tony Komaroff, Ed Taylor, other board members and me. He served very well on the AACFS board. He developed cancer and died in September 1995 at the age of 64 and was very much missed by his fellow board members of AACFS.

Mary Sue, Rudy Jr. and his wife Lola told me that he wanted his relatives, friends and associates not to send flowers but to please send money to AACFS for a worldly cause. We received over $15,000 in is memory and opened a fund in his honor and established an award in his name called the Governor. Rudy Perpich Memorial award in CFS. The recipient of the award has to be someone who has contributed greatly in one form or the other in CFS. Today the family of Governor Perpich continues to support his legacy and his wife and children work together to maintain his memory. The AACFS continues to keep his memory alive by awarding this prestigious award at the international conference every two years.

I am honored to receive this award that will keep his memory alive and would remind us that we need to join hands and minds to combat CFS. This is what Governor Perpich wanted not for his family, but for all who are suffering.

Thanks for your attention.

Presented at the 8th IACFS International Conference January 2007 Fort Lauderdale, Florida USA


IACFS Awards: Junior Investigator Award

An MD or PhD who has more recently become involved in CFS/FM research is eligible for the Junior Investigator Award. This award was established to encourage new CFS/FM researchers by recognizing their interest, talent, and work. Awardees receive $1000 toward expenses at the meeting.

This year's awardee has been involved in CFS for at least 8 years, having worked with Dr. Kenny DeMeirleir at the Vrije Universiteit Brussel (better known as the VUB). Elke Van Hoof is a clinical psychologist with the Department of Human Physiology at The VUB, and also a full professor at the University of Hasselt (Belgium). In addition to teaching, she maintains a private practice of psychology especially for persons with CFS.

In 2006 alone Dr. Van Hoof authored 16 journal articles on CFS, and gave almost 30 presentations in Canada, Monaco, Belgium, Japan, Kuala Lampur Malaysia, Spain, and Adelaide Australia. She has at least 18 other published articles to her name. Dr. Van Hoof is currently developing a website about CFS for Dutch-speaking patients, and is exploring the possibility of online teaching or therapy for those patients who are house bound. Elke is a delightful and brilliant woman whose wide range of interests include reading, cinema, fitness, walking, bicycling, skiing, travel, and gardening.


IACFS Awards: The Rudy Perpich Memorial Lectureship

The Governor Rudy Perpich Memorial Lectureship Award is named after the late Minnesota Governor who provided tremendous enthusiasm, encouragement, and support to the AACFS at its inception, and was instrumental in promoting CFS to governmental and political figures. Nominees should be well known in the CFS/FM field and must have made considerable contributions in research. Previous awardees include Alexis Shelekov, MD (1996), Assistant Secretary of HHS, Dr. Phillip Lee (1998), Anthony Komaroff, MD (2001), Daniel Peterson, MD (2003), and Dedra Buchwald, MD (2004).

Dr. Dharam V. Ablashi is no stranger to this group. He is a co-founder of the IACFS, a former President, former Treasurer, and a current board member of the association. Dr. Ablashi is retired from Advanced Biotechnologies Inc, a biomedical company that specializes in the field of human and animal virology; and he was also an Adjunct Professor of Microbiology at the Georgetown University School of Medicine in Washington, DC. Prior to working in private industry, he was a senior investigator at the National Cancer Institute for 22 years. His research has been on human and simian herpesviruses, and he co-discovered the human herpesvirus 6 (HHV-6) in 1986 while working with Dr. Robert Gallo, the co-discoverer of HIV. Dr. Ablashi is the author and co-author of over 285 scientific papers, co-editor of 11 books, and has given many lectures/seminars all over the world. He is internationally known in the field of human herpesviruses and has served on national and international scientific committees including NIH and W.H.O. In 1973 Dr. Ablashi was Fogarty International Scholar at the W.H.O. International Agency for Research on Cancer in Lyon, France. He is also the co-founder of the International Epstein-Barr Virus Association, and most recently has been extremely active as co-founder of the HHV6 Association.


IACFS Awards: Gantz Memorial Outstanding Clinician Award

This year the IACFS inaugurates the memorial Nelson Gantz Outstanding Clinician Award. Gantz was a lighthearted, unforgettable character, and a passionate clinician. Colleagues remarked that he had “an uncanny ability to find his way to the correct diagnosis.†He was one of the first clinicians to study the 1984 Lake Tahoe outbreak of CFS, contributed to the international case definition of CFS, and was an empathetic caregiver to many PWCs. Gantz was Chief of Infectious Diseases at Pinnacle Health Center in Harrisburg, PA, for many years, but became chief of infectious diseases at Boulder Community Hospital in 2003. He was an author of 77 medical journal articles and contributed to 81 medical texts, but Nelson probably will be best remembered for his signature bow tie, his perpetual grin, and his infectious sense of humor. Nelson Gantz died on June 20, 2006 after a long bout with colon cancer. The Outstanding Clinician Award is dedicated to Gantz, and awarded to a physician who emulates Gantz's clinical acumen, his passion for medicine, and his empathy for persons with CFS and FM.

There was very little discussion as to who should receive the very first Outstanding Clinician Award. The leading candidate was Dr. Daniel Peterson, who emulates Nelson Gantz as both a researcher and a widely respected clinician. Dr. Peterson practices at Sierra Internal Medicine, in Incline Village, Nevada. Peterson earned his place in medical history by documenting the historic 1984 CFS outbreak in Incline Village. His work in this area has been hailed as "a milestone in the study of CFIDS." Among Dr. Peterson's many career distinctions include his pioneering studies of Ampligen as a treatment for CFS, and studying the possible role of human herpes virus 6 (HHV-6) in CFS patients. He is a former board member of the IACFS, and has been instrumental in raising substantial funds for the association. In addition to maintaining his medical practice, much of Dr. Peterson's time recently has been expended in developing a national CFS center in Reno, Nevada. The goal of this center is threefold: (1) To diagnose and treat PWCs, (2) to expand CFS research, and (3) to train young physicians to recognize and manage CFS.


IACFS Awards: Special Service Award

Each year since 2001, the IACFS has recognized extraordinary individuals outside the field of research who have contributed substantially to those with Chronic Fatigue Syndrome or Fibromyalgia. This category may include advocates, leaders, practitioners, supporters, or any person who has lent special effort or talent to the field.

This year's Special Service Award goes to a woman who has been tirelessly -- and almost single-handedly -- promoting FM and CFS research for about 20 years. She founded the FM Network in 1988 to provide news and current information to persons with FM. Working out of her own home, she developed a newsletter that has become the foremost source of FM information for patients.

Beginning in 1991, FM Network started hosting informational booths at major medical conferences to spread the word about the legitimacy of FM and CFS to people in the health care field, most of whom were physicians. Then in 1993 she founded AFSA – the American Fibromyalgia Syndrome Association – a non-profit organization that raises funds and supports research in FM and CFS. Over the next 13 years Kristin Thorson raised almost $2-million, which has supported 30 different research projects. Remarkably, AFSA is rated as one of the most efficient charitable organizations in the US because more than 90% of the donations goes directly toward research.

You may recognize Kristin Thorson because she has attended virtually all of the AACFS Conferences. Kristin has worked closely with some of the best known names in our field including Bob Bennett, Jon Russell, our former board members Dan Clauw and Don Uslan, sleep expert Harvey Moldofky, Dan Wallace, Richard Podell, Dan Peterson, Charles Lapp, and many others. It's time that we give recognition to this woman who has given so much to us, and especially to patients with FM and CFS.



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