Winter 2007-8

December 1, 2007

Winter 2007-8  
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

The Need for Treatment Guidelines

We have some circular logic that is getting in the way of good clinical care. It goes like this: We need evidence-based guidelines to develop widespread provider education forums. We need data from experts to develop the evidence that would result in evidence-based guidelines. We have too few experts with clinical data sets from which we might derive the evidence. We need to train more experts, to develop the clinical patient data sets… You see where I am going with this.

In the USA, more than 80% of CFS/ME patients have not found a provider expert enough to make a diagnosis, let alone treat their illness. It is a gaping hole in our health care system, and is true across the globe. Our patients are falling into this chasm. The lack of providers with any training in this field guarantees that this will remain the single biggest issue facing our patients. As investigators, it deprives us of our subject population and skews the population we do study to those patients that can overcome the barriers of our health care systems to seek expert care. All in all, this is simply unacceptable.

Still, we can take some lessons from other illnesses. In HIV, before we knew the name or treatment of the pathogen, we had guidelines based on evidence. We knew to treat our immuno-compromised patients with medications that prevented opportunistic infections; we knew that we shouldn't ignore symptoms of serious complications, etc. The early guidelines borrowed much from other related fields, and they were very helpful. As the HIV-specific evidence grew the guidelines would change to reflect the increasing knowledge base.

And that is where we stand with CFS/ME. Diagnostic guidelines already exist in the form of the international research case definition and the Canadian clinical case definition (both have links on this web page). Treatment approaches that borrow heavily from related fields, but are evidence-based are in play. Sometimes this works well, and sometimes studies in CFS/ME prove that something that works in one area may not work as well in our patients (e.g., fludrocortisone for neurally mediated hypotension in CFS, a study performed by the NIH and Johns Hopkins investigators). So we are charged with evaluating the evidence, and also advise on priority areas for additional research.

The IACFS/ME will sponsor the development of treatment guidelines, and will be working with our newest board member, Ken Friedman, and a team of international experts to review the state of our current knowledge. I would invite the membership to be involved in this process. We need to hear from you as we prioritize the needs and develop this knowledge base. Novel approaches to provider education are also welcome. Those with special expertise, volunteer to participate. This may be one of the most important "products" the IACFS/ME can provide for our members and the international community.

Thank you and happy holidays!

Nancy G. Klimas, M.D.
President, International Association for CFS/ME (IACFS/ME)

[email protected]


CFS/ME in the Chronic Illness Era

Patricia A. Fennell

There is a paradigm shift occurring in medicine, from models focused on treating acute illnesses to those concerned with managing chronic conditions. This shift coincides with the higher prevalence of chronic illnesses resulting from factors such as lower mortality from formerly fatal illnesses and an aging population. The chronically ill do not fare well in an acute care model and, as a result, it has become imperative to develop new models of care and comprehensive, coordinated case management models that will be effective for these chronic conditions. This shift in medicine toward chronic conditions will force CFS/ME to compete to an even higher degree for already limited research dollars and attention, but may provide benefits in the clinical arena, as health care adapts to serve the expanding universe of the chronically ill.

Chronic fatigue syndrome, myalgic encephalopathy, CFS, ME, chronic illness, phase-based intervention, traumatization, coordination of care, persistent acute illness, aging population, managed care, Fennell Four Phase Model, phase-based comprehensive case management, chronicity

There is a paradigm shift occurring in medicine. As the prevalence of chronic illness has grown significantly, it has become imperative to develop new models of chronic care and comprehensive case management models of care that will be effective for these chronic conditions.

For most of history the medical profession has focused on acute illnesses due to the fact that they are dramatically obvious and had the potential to be cured. Once an acute disease was diagnosed, doctors could apply whatever treatment had become appropriate, and the patient either recovered or died. Chronic illnesses have always existed, but until the late 20th century, most medical practice attended to illnesses that had a recognizable onset, course, and conclusion.

In the opening decade of the 21st century, however, significantly more attention is being paid to chronic illness; a quick review of the 2008 American presidential candidates’ talking points will show that this topic is clearly on the national radar. This is in large part due to the enormous increase in the number of people judged to have a chronic illness – and the costs of chronic illness to the health care system.

Worldwide, chronic diseases are the leading cause of death and disability. In 2005, chronic diseases caused approximately 60% of deaths and it is predicted that chronic disease-related deaths will increase by 17% over the next 10 years, from 35 million to 41 million. Chronic disease is not restricted to developed nations or older populations: it is growing fastest in low-income countries; almost half of those who die from chronic diseases are younger than 70 (World Economic Forum, 2007).

About 40% (369 million out of 910 million) of all doctor’s visits in the United States are for chronic conditions, and the cost of medical care for persons with chronic diseases accounts for 78% of total medical care expenditures in the nation (Hing 2006; National Alliance for Caregiving and AARP 2004). And this figure does not include costs that are not directly associated with medicine, but are directly attributable to needs stemming from the chronic illness. CFS/ME-related disability was estimated to cost the U.S. national economy $9.1 billion per year, or $20,000 per patient, in terms of lost workforce and household productivity; medical expenditures were not examined.

Typology of Chronic Illness
We postulate four subsets of the chronically ill:
  • •traditional chronic illnesses such as CFS/ME, fibromyalgia, lupus or multiple sclerosis;
    •survivors of acute illnesses either with lingering symptoms that may be recategorized as a new illness or with conditions that require ongoing care;
    •persistent acute illnesses such as HIV/AIDS;
    •the aging population, who present a variety of ongoing illnesses;

Traditional chronic illnesses, notably CFS/ME, manifest differently from acute illnesses. They frequently do not have a clearly identifiable onset; instead, the symptoms usually emerge over time, ebbing and flowing, increasing or decreasing in severity, sometimes remaining the same. Often it is difficult to measure the symptoms by standard tests or with instruments, requiring reliance on the patient’s self-reporting, which the profession frequently regards as unreliable and nonquantifiable.

Advances in medicine in the developed world have made it possible to stabilize the condition of many patients with serious acute illnesses, even though these interventions may not effect a cure. Examples would be those with cardiovascular and respiratory conditions, survivors of stroke and cancer, those with obesity problems and diabetes, individuals on kidney dialysis, and so forth. Similarly, patients now classified as having a chronic illness are the huge cohort of individuals with a “persistent acute illness” such as HIV/AIDS (Fennell 2007). In the less economically developed world, of course, many of these formerly fatal conditions still exist as acute conditions, and it will require distinct improvements in the health infrastructure of those countries to arrive at the situation that now exists in the western world.

Finally, as people in the technologically advanced world live longer, most individuals will eventually either suffer from a traditional chronic illness or survive an acute illness in a condition that requires persistent attention. Many will suffer several conditions at the same time. Aspects of typical or even healthy can resemble those of living with chronic illness (e.g., arthritis, sleep disorders and depression). With the Baby Boom generation about to enter the so-called “young old” age, the numbers of people so afflicted will increase significantly (Tornstam 2003).

Within the four categories, chronic illnesses affect segments of the population differently. Certain diseases are more prevalent among women than men or among different ethnic or racial groups (Anderson 2005). In addition, patients’ experience of chronic illness is differentiated by their gender, ethnicity, religious/philosophical belief, social and economic status, and by the geographic region of the country in which they live, with its particular political and economic environment.

Chronic Illness in Society
Many problems faced by those with chronic illness—especially after medical interventions have stabilized their condition—involve reactions to their condition and its economic consequences. Entire family patterns often need to be reorganized. Patients may need ongoing care just to manage the activities of daily living. Some may not be able to work or attend school or can only do so at greatly reduced hours. Medical costs become an issue, even if patients are covered by medical insurance.

Chronic illness patients may suffer traumas in addition to the actual physical manifestations of the illness. There is the trauma produced by a prolonged diagnosis period, as well as the trauma of the actual onset or diagnosis itself. There is the stigmatizing response of family, society, and workmates as they become frustrated by the unpredictability and chronicity of symptoms because the patient never “gets better” and does not go back to fulfilling former responsibilities. The chronically ill may also suffer from premorbid and comorbid traumas. They can also suffer iatrogenic traumatization caused by responses on the part of the medical establishment, which can range from impatience to disbelief. Moreover, the repeated exposure to the medical establishment that chronic illnesses occasion increase the likelihood of such trauma (Fennell 2004).

Chronic Illness in the Health Care System
It can be argued that, by their very nature, chronic illnesses were in the past unsatisfactory for professionals to treat because patients were not cured. They were, at best, maintained, and often not very satisfactorily.

As a consequence, patients with chronic conditions can fare poorly in the acute-care model of care delivery. Effective care usually requires longer visits than is common in acute care. In treating chronic illnesses, the same intervention may change in effectiveness depending on when in the course of the illness the intervention occurs. Necessary interventions can require the input of multiple disciplines that have not usually worked together, and to be effective they require close, careful coordination.

Historically, there has been little coordination across the multiple settings, providers, and treatments of chronic illness care. Several variations of managed care have emerged in the past decades in an effort to improve care, reduce unnecessary service utilization, and control spiraling costs. Nonetheless, despite its initial promise, managed care has not achieved truly coordinated care. In actual operation it appears to emphasize its fiscal goals. Managed care does not address the complexity of chronic conditions, and in the interests of cost-cutting tends to reduce time with patients rather than increase it. Moreover, any care model must work within Medicare and Medicaid guidelines from the federal government and other programs at the state level, with their myriad of documentation and procedural requirements.

Self-management programs have often been advocated as a lower-cost method for management of chronic illnesses, but recent research has shown that self-management alone has limited efficacy and there remains an essential and ongoing role for clinicians in chronic illness treatment (Griffiths 2007).

CFS/ME in the Chronic Illness Era
It is in this arena that CFS/ME squarely sits. As more and more attention is paid to chronic illnesses, by virtue of their increased prevalence and costs to the economy, health care systems must become more accommodating of the unique needs of chronic illness patients. This should benefit CFS/ME patients and the clinicians who treat them, as the system will adapt to their needs. On the other hand, competition for already-limited research and health-care reimbursement dollars will tighten further, as CFS/ME will compete with a larger number of chronic conditions for resources.

The Fennell Four Phase Treatment Model and Phase-Based Comprehensive Case Management
Time itself—the changing actualities and perceptions that chronic illness patients have of their illness and the changing interventions required as time passes—determines how chronic illnesses can be best managed. The conceptual frameworks that appear to offer the most promising results are those that focus on where patients are on a time continuum—that is, what phase they are in.

To achieve real-life changes in all the domains of a patient’s life—which are all affected by the patient’s illness—requires a chronic clinical treatment model in addition to a phase-based comprehensive case management approach.

As one example of an effective treatment model, the Fennell Four Phase Treatment (FFPT) model assumes the involvement of multiple body systems in chronic illness and addresses both the illness’s complexity and its chronicity. The model recognizes the involvement of four domains in patients’ lives: the physical/behavioral, the psychological, the social/economic, and the philosophical/spiritual (Fennell, 2008 in press). Taking a systems-based, multidisciplinary approach that “maps” the chronic illness process for both patients and clinical providers, FFPT matches best medical practice to phase. This enhances compliance with and effectiveness of treatment, thereby saving time and resources. The concept that patients’ experience may need to be understood as a function of the particular phase of the illness has been supported by research (Jason, 2000(a); Jason, 2000(b); Fennell, 1998).

FFPT identifies four phases—crisis, stabilization, resolution, and integration—and plots them against the four domains. Progress through the phases is not necessarily one-time or one-directional. If new life events create new crises or if insight fails, patients may cycle back into an earlier phase. Without comprehensive understanding that considers the universe of the chronic condition, it is not uncommon for a vicious cycle to occur in which the patient moves perpetually from crisis to stabilization and back to crisis again.

Four Phase Case Management continually assesses the patient’s self-management capacities and provides a “world view” for patients, their families, and their social units. Where possible, case managers train patients to manage their own care. The work of the case managers also helps clinicians target resources to current and ongoing problems and concerns. It focuses on four areas: disability, treatment/triage support, psychological support, and matching intervention to phase.

Disability is an extremely important issue for those with chronic illnesses, and it is poorly understood by many in the health care field. In Four Phase Case Management it is incumbent on the case manager to make a disability assessment, including a thorough record review, as soon as possible. The case manager also refers the patient for related legal, medical, and auxiliary social services, as necessary; prepares the patient and family for medical and psychological disability assessment; and readies the patient for court proceedings, if required.

Treatment and triage support proceeds out of patients’ ability to understand their medical situation and to network with the multiplicity of disciplines necessary to treat their cases. If patients cannot do this, the case manager must be prepared to interface with the patients and their various partners in the medical system. Case managers must also, if necessary, play a role in interventions with the family, the community, or the workplace.

Psychological support comes in the form of the manager orienting patients to and educating them about chronic illness. This support also includes working to improve patients’ agency, returning to them the locus of control in their lives, making them aware of and able to deal with societal issues, and developing in patients a sophistication with regard to the health system.

Matching intervention to phase alters as patients negotiate the phases. In the first, or crisis, phase where the clinical goal is trauma and crisis management, the case management goal is to establish a case management focus. This includes restructuring the activities of daily living, engaging in family case management, assisting patients in navigating the health care system, intervening in the workplace if necessary, and acting as the patients’ advocate.

In the second phase the clinical goal is stabilization. The case management goals are patient data collection and activity restructuring. With the help of the case manager, patients assess and restructure their activity levels and develop new parameters and norms. The case management continues to help with family case management, negotiation of the health care system, intervention with the employer, and patient advocacy.

The third phase, resolution, has as its clinical goal the development of meaning and patients’ construction of a “new self.” The case management goal is helping patients develop self-management skills. Patients learn to monitor their activities, coordinate their medical care, become their own health care advocates, and in general assume advocacy for themselves in the world at large.

Phase four has integration as its clinical goal, and the case management goal is to deepen patients’ self-management skills.

An integrated clinical treatment and case management approach such as this captures essential elements of experience that can determine whether interventions will be successful. It particularly points to the necessity of solving problems—familial, social, economic, and philosophical, among others—that are rarely part of the conventional medical treatment model. Because teamwork is essential, among a broad assortment of professionals, all committed to involving the patient whenever possible in the process, a case management protocol seems best suited accomplish this in a successful, ethical manner.


American Academy of Allergy, Asthma and Immunology (2006). Tips to Remember: Childhood asthma. Accessed at:

Anderson RN, Smith BL. (2005) Deaths: Leading causes for 2002. National vital statistics reports (National Center for Health Statistics), 53(17).

Centers for Disease Control and Prevention (2006). CFS Basic Facts. Accessed at:

Centers for Disease Control and Prevention. (2004). The Burden of Chronic Diseases and Their Risk Factors: National and State Perspectives Available at:

Centers for Disease Control and Prevention (2002). Prevalence of self-reported arthritis or chronic joint symptoms among adults – United States, 2001. MMWR, 51:948-950.

Coresh, J., Astor, B.C., Greene, T., Eknoyan, G., Levey, A.S. (2003). Prevalence of chronic kidney disease and decreased kidney function in the adult US population: Third National Health and Nutrition Examination Survey. American Journal of Kidney Disease, 41:1-12.

Fennell, P.A. (in press, 2008). Chronic Illness. In: Oxford Encyclopedia of Social Work, 20th Edition. Terry Mizrahi and Larry E. Davis, editors.

Fennell, P.A. (2007). Behavioral health with a CFS perspective: delivering care in the new chronic illness era. Presentation at the International Association for Chronic Fatigue Syndrome Biannual Conference, January 13, 2007. Ft. Lauderdale, Fl.

Fennell, P.A. (2003). Managing Chronic Illness: The Four Phase Approach. New York: John Wiley and Sons Inc.

Fennell, P.A. (2001) The Chronic Illness Workbook. Oakland, CA: New Harbinger Press.

Fennell, P.A., Jason, L., Klein, S. (1998). Capturing the different phases of the CFS illness; The CFIDS Chronicle, 11(3),3-16.

Griffiths, C., Foster, G., Ramsay, J., Eldridge, S., Taylor, S. (2007). How effective are expert patient (lay led) education programmes for chronic disease? British Medical Journal, 334; 1254-1256.

Hebert, L.E., Scherr, P.A., Bienias, J.L., Bennett, D.A., Evans, D.A. (2003). Alzheimer disease in the US population: prevalence estimates using the 2000 census. Archives of Neurology, Aug;60(8):1119-22.

Hing E, Cherry DK, Woodwell DA. (2006). National Ambulatory Medical Care Survey: 2004 summary. Advance Data From Vital and Health Statistics, National Center for Health Statistics, 374.

Jason, L.A., Fennell, P.A., Taylor, R.R., Fricano, G., and Halpert, J. (2000a). An empirical verification of the Fennell Phases of the CFS illness. Journal of Chronic Fatigue Syndrome, 6(1), 47-56.

Jason, LA, Fricano, G., Taylor, R.R., Halpert, J., and Fennell, P.A., Klein, S., Levine, S. (2000b). Chronic fatigue syndrome: an examination of the phases. Journal of Clinical Psychology, 56(12):1497-1508.

Lupus Foundation of America (2006). Introduction to lupus. Accessed at:

National Alliance for Caregiving and AARP (2004). Caregiving in the U.S. Available at:

National Multiple Sclerosis Society (2005). Who gets MS? Accessed at:

Rosamond, W., and the American Heart Association Statistics Committee and Stroke Statistics Subcommittee. (2007). Heart Disease and Stroke Statistics--2007 Update. Circulation. 2007;115:e69-e171.

Tornstam, L. (2003) Gerotranscendence from young old age to old old age. Online publication from The Social Gerontology Group, Uppsala. Accessed at:

World Economic Forum & PriceWaterhouseCoopers (2007). Working Towards Wellness. Accessed at

Suggested Links:

Albany Health Management Associates:
Patricia A. Fennell:
Improving Chronic Illness Care:
Partnership for Solutions:

IACFS/ME Conference in Oslo, Norway


The Board members of the IACFS/ME gave two days of talks in Oslo to both professional and patient groups on October 18-19, 2007.
Click here for additional information and photos from the Oslo conference.

Content Analysis of ME/CFS in Medical Training Textbooks

Nicole Porter, Erin Paavola, and Leonard A. Jason
DePaul University

Medical textbooks serve as a cornerstone for the training of medical students and residents, as well as providing authorative references for experienced healthcare providers (Rabow et al., 2000). Given the importance of medical textbooks in codifying best practices, several authors have engaged in textbook analyses on topics such as end of life issues (Lynn, 1997) and nurses’ assessment of symptoms (Ferrell, 1999). However, no reviews have analyzed the content of medical textbook references for ME/CFS.

Since the mid-1960’s, with Goffman’s publication of Stigma (1963), several studies have examined the social standings of medical conditions (Parson, 1951; Freidson, 1970). As an example, Album and Weston (2007) recently reported that chronic conditions having no specific bodily location and with less visible treatment procedures were held among the lowest prestige by physicians and medical students. This resulted in fibromyalgia (FM) being ranked last among 38 diseases (ME/CFS was not included on their list). It is possible that lower prestige illness might be given less attention in medical textbooks and in the training of medical students. Certainly, it is important that healthcare professionals be provided with up-to-date, non-biased information about ME/CFS in their textbooks and related course materials.

References to ME/CFS in medical texts are currently being reviewed by the Center for Community Research at DePaul University. This project is collecting, analyzing, and interpreting ME/CFS sections from recently published medical textbooks. The sample consists of medical books from five university medical libraries, those sold in university bookstores, or published by major medical publishing houses.

Our objective is to determine the quantity and quality of information included in these texts, in order to establish the comprehensiveness of information and the accuracy of the content presented for ME/CFS. Preliminary results for this study suggest that there is limited content available about this illness. Providing a review of the contents in these textbook sections will allow us to evaluate the accuracy of information, and to determine if there are any misrepresentations.

If we identify biases within medical training materials, it might be important to initiate a dialogue with publishers, medical schools, researchers, and those with ME/CFS about the inclusion of specific educational content within medical texts and schools. This project is one more example of how the IACFS/ME organization and researchers can work to uncover biases in the published literature, and over time correct any misinformation or lack of information within critical training materials.

Album, D., & Westin, S. (2007). Do diseases have a prestige hierarchy? Survey among physicians and medical students. Social Science & Medicine. doi:10.1016/jsocscimed.2007.07.003

Ferrell. B., Virani, R., Grant, M. (1999) Analysis of symptom assessment and management content in nursing textbooks. J Palliative Medicine, 2, 161-173.

Friedson, E. (1970). Profession of medicine: a study of the sociology of applied knowledge. New York: Dodd Mead & Co.

Goffman, E. (1963). Stigma. Englewood Cliffs, NJ:Prentice Hall.

Lynn, J. (1997) measuring quality of care at the end of life: a statement of principles. American J of Geriatric Society, 45, 526-527.

Parons, T. (1951). The social system. New York: The Free Press of Glencoe.

Rabow, M., Hardie, G., Fair, G., & McPhee., S. (2000). End-of-life care content in 50 textbooks form multiple specialties. JAMA, 282, 6, 771-778.


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 [email protected].

Bulletin Announcement

The Bulletin is soliciting calls from the membership for articles and announcements. This provides an opportunity for you to convey your expertise to an international audience of interested scientists, clinicians, and educators. Please send your submissions (or any questions) to [email protected].

Please cc any submissions to me. Thanks.

Fred Friedberg, Ph.D.
Principal Investigator
Chronic Fatigue Syndrome Research Project
Putnam Hall/South Campus
Stony Brook University
Stony Brook, NY 11794-8790
[email protected]

Call for Award Nominations

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

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), Dedra Buchwald, MD (2004), and Dharam Ablashi, D.V.M. (2007). Awardees are expected to attend the IACFS Banquet and make a brief presentation. Awardees also receive a plaque, travel and accommodations for the meeting, and $300 for expenses.

You may email your nominations to Dr. Cindy Bateman care of [email protected]

Junior Investigator

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. Previous awardees are Pascale DeBecker, PhD (1998), Richard Herrell, Phd (2001), Dane Cook, PhD (2003), Susan Torres-Harding, PhD (2004), and Elke van Hoof, Ph.D. (2007) Awardees receive $1000 toward expenses at the meeting.

You may email your nominations to Dr. Cindy Bateman care of [email protected]

Gantz Memorial Outstanding Clinician

The IACFS/ME will present its second memorial Nelson Gantz Outstanding Clinician Award at the 2009 conference in Reno. Gantz was a lighthearted and 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 1983 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, Pennsylvania, for many years, but became chief of infectious diseases at Boulder Community Hospital in 2003. He was author or co-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/FM. The first award was given to Daniel Peterson, M.D. (2007).

You may email your nominations to Dr. Cindy Bateman care of [email protected]