ME/CFS Primer/Education Bulletins Spring 2007
 

Spring 2007

May 1, 2007
 
 
Spring 2007  
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
Letter to the Editor
International Forum - The UK National ME Observatory
Issues Involved in Name Change Recommendations
Ultra-Brief Self-Management of CFS in Medical Care


Letter from the President

 

presidentWhat’s in a name? The membership has voted to change the name of our organization to the IACFS/ME and it is official. There has been a vigorous response to this organizational name change. My email peaked at 200 new emails a day with people weighing in on the name of the organization, the name of the illness, and the implications of “/ME” as it relates to our patients and our association.

What started as a simple change of our organization’s name did reinvigorate the whole name-change debate, and I believe such debate is good. Keep in mind the board added the “/ME” to IACFS to embrace the international nature of our organization, and hoped to duck the “opathy vs. itis” discussions altogether. No luck there! But I do believe that changing the name of the IACFS to IACFS/ME has accomplished its main goal, to become more representative of investigators and clinicians worldwide.

Of course, changing the name to IACFS/ME is not the same as changing the name of CFS, but it raises the two-decade old question again. I don’t know of a single investigator or clinician who thinks the name CFS is a good name for this illness, or even that it accurately describes our patient population. Unquestionably, the name CFS has done harm both to patients who are dismissed as merely chronically fatigued and to the credibility of professionals who are attempting to understand and treat a complex illness that involves neuroinflammation, autonomic and immune perturbations, and hormonal dysregulation.

So, if the IACFS/ME has stirred up the name change debate, I won’t apologize. It’s time. We take the charge very seriously, and will continue to facilitate advances in knowledge and treatment of this illness on an international stage.

To that end, our next conference will take place in Europe. Birgitta Evengard is the chair of the planning committee and is currently looking at several possible venues. If you would be interested in locally hosting our next conference, please do not hesitate to contact either Birgitta or Kenny DeMeirleir. We have heard from interested groups in the UK, Belgium and Spain.

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


Letter to the Editor

 

To the Editor of the Newsletter of the IACFS/ME: While the January meeting of the IACFS/ME was wonderful in many ways there still seemed to be a problem in the use of the diagnostic term “depression”. It was difficult to determine at times whether the author/speaker was referring to pre-illness depression or depression appearing after the onset of CFS/ME or FM, or both. The two forms of depression, in our experience, are quite different in many ways. Conflating the two has led to diagnostic mayhem in the past causing clinical confusion, false conclusions in many research studies, and possible harm to our patients.

Furthermore, the methods used to diagnose depression or other psychiatric problems or their absence, whether before or after onset, should include a thorough individual and family history and careful clinical interview in order to get a clear picture of the patient’s nature and functioning both prior to and after onset.

We suggest to the Board and future program committees that, when possible, they insist that research grants and papers submitted clarify, no matter which diagnostic criteria are used, that there be clear distinction as to the timing of depression onset, description of how the diagnosis was made, and the nature of the depression so that the reader/listener can determine the accuracy of diagnosis and the validity of the paper.

Alan Gurwitt , M.D., Newton Highlands , MA , USA Eleanor Stein, M.D., Calgary, Canada


International Forum The UK National ME Observatory Dr. Derek Pheby (Project Coordinator)

 

The UK’s National Lottery has recently awarded more than half a million pounds to Action for ME and a consortium of academic institutions to establish a National Observatory for ME/CFS.

People living with ME/CFS experience a long term disabling illness. However, addressing their needs has been impeded by lack of knowledge. Investment in developing service provision across England is taking place in a context where there is no possibility of undertaking health needs assessment, as there is little epidemiological information about the public health burden of the disease. Similarly, the impact of CFS/ME on the lives of people with this condition is poorly understood by many health and social care professionals, as well as by other professions and the general public, so the experience of living with ME/CFS is all too frequently exacerbated by unsympathetic and unhelpful reactions from others who could be providing support.

In order to address these problems, and to fill these gaps in knowledge, Action for ME (AfME) has been awarded three-year funding to establish a National ME Observatory. The funding, which totals £503,028, comes from the Big Lottery Fund, which distributes funds from the UK National Lottery. This is the largest single award ever made by the Lottery for medical research. It will be used to support a programme of epidemiological research, including a disease register, and qualitative social research by a network of academic institutions comprising the Observatory.

The Observatory will provide an infrastructure to support the development of systematic research in this area, and an umbrella under which it can flourish. Initially, it comprises AfME, the University of East Anglia (UEA), the London School of Hygiene and Tropical Medicine (LSHTM) and the Hull-York Medical School. It is envisaged that in the future the Observatory will expand to include other representatives of the ME/CFS community and other universities, independent researchers and stakeholders. Its research programme is designed to fill gaps in scientific knowledge about the epidemiology of ME/CFS, and about its impact on people with the condition and those close to them. It will address five main barriers to well-being and health which exist for people with ME/CFS, viz.: (1) Poor understanding of the experience of living with ME/CFS and social exclusion. (2) Insufficient information on the sources of support for people with ME/CFS. (3) Insufficient epidemiological information about the distribution of the disease in the population and its impact on the quality of life of patients and careers. (4) Health inequalities in the ME/CFS community and scarcity of research to identify the scale of the problem and help understanding its process. (5) Research knowledge that is largely restricted to the academic community, because research is usually done without the active participation of people with ME/CFS, and therefore often fails to address their real needs.

The Observatory will attempt to overcome these barriers in various ways, through the projects which it will undertake. Within the scope of the present 3 year project, the Observatory will pilot a disease register of confirmed cases of ME/CFS and conduct a further three inter-related studies in the areas of epidemiology and social research. These studies will aim to estimate the occurrence and distribution of ME/CFS in three contrasting regions of the UK and identify determinants of quality of life of adults with ME/CFS and their carers, assess the impact of social inequalities on the experience of people living with this disease, and of client and professional attitudes that may influence care, and review systematically support for social inclusion of people in England living with ME/CFS. We will involve the ME/CFS community in the research process and, by disseminating the findings to a broad audience, we aim to empower the ME/CFS community to influence the general public, professionals and policy makers, so leading to policy and practice which is more responsive to their needs.

The Observatory is a pioneering initiative in the field of ME/CFS, with a vision of advancing science, policy and practice, at the same time as promoting social inclusion and empowering the ME/CFS community, and work is progressing. The research projects have all received ethical approval from the London Multi-Centre Research Ethics Committee. In addition to the expected benefits of the specific research programme in the first three years, the continuation of the Observatory (through further research funds to be sought from other sources such as the Medical Research Council and the National Health Service) will bring possibilities of ongoing benefits to people living with ME/CFS and those caring for them.

Dr. Derek Pheby (Project Coordinator)


Issues Involved in Name Change Recommendations Leonard A. Jason, Nicole Porter, Jennifer Okasinski, & Mary Benton DePaul University

 

In 1988, a group of researchers, many of whom were at the CDC, coined the name chronic fatigue syndrome (CFS) and developed a case definition (Holmes et al., 1988). Most patients feel the term CFS trivializes the seriousness of the illness (Name-Change Survey Results, 1997; Friedberg & Jason, 1998) and has contributed to health care providers having negative attitudes towards those with this syndrome (Anderson & Ferrans, 1997; David, Wessely & Pelosi, 1991; Green, Romei & Natelson, 1999; Jason, Richman et al., 1997; Shlaes, Jason & Ferrari, 1999).

The patient community has felt that the term chronic fatigue syndrome is inappropriate, as the illness is typified by many severe symptoms in addition to fatigue, and fatigue is generally regarded as a common symptom experienced by many otherwise healthy individuals in the general population (Taylor, Friedberg, & Jason, 2001). In addition, CFS is frequently confused with chronic fatigue, which is a symptom of many illnesses, including some psychiatric disorders. The negative stigma that is associated with CFS could also be due to the trivializing name that has been given to this disorder.

The name selected to characterize an illness, such as chronic fatigue syndrome, can influence how patients are perceived and ultimately treated by medical personnel, family members and work associates (Jason, Holbert, Torres-Harding, & Taylor, 2004; Jason, Holbert, Torres-Harding, Taylor, Le Vassuer, et al., 2004).

Two studies evaluated whether different names for CFS indeed prompt different attributions regarding its cause, nature, severity, contagion, and prognosis among samples of medical trainees and university undergraduates (Jason, Taylor, Plioplys, Stepanek, & Shlaes, 2002; Jason, Taylor, Stepanek, & Plioplys, 2001). Results of these studies suggested that participants' attributions about CFS change based upon the different diagnostic labels used to characterize it. The ME label was associated with the poorest prognosis, and this term was more likely to attribute a physiological cause to the illness, and less likely to consider the patient in the case study as a potential candidate for organ donation.

Many health care professionals and research scientists felt that if the name were to be changed, it would be best to have a scientific basis for the change. Unfortunately, few data have been collected to help guide the process of revising the name (Jason, Eisele, & Taylor, 2001).

Although it was expected that the name chronic fatigue syndrome would be eventually replaced as more information became available, this name has remained and has become the most commonly used label within the United States (Friedberg & Jason, 1998).

The term ME/CFS is now being used in many countries, as proposed by the Canadian Case definition (Carruthers et al., 2003). Jason, Torres-Harding, Jurgens, and Helgerson (2004) compared persons meeting the Canadian case definition, the Fukuda et al. (1994) criteria, and people experiencing chronic fatigue explained by psychiatric reasons. The Canadian criteria selected cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurology symptoms. Below we provide some of the reasons for this finding.

To meet the criteria for CFS the case definition, the Fukuda criteria required the concurrent occurrence of at least four of the following eight symptoms including sore throat, tender cervical or axillary lymph nodes, muscle pain, multiple joint, pain without joint swelling or redness, headaches of a new type, pattern or severity, unrefreshing sleep, post exertional malaise lasting more than 24 hrs, persistent or recurring impairment in short term memory or concentration. However, because only four of these symptoms needed to occur to meet criterion, a person could be diagnosed without having three of the eight symptoms that were considered as being critical markers for having this illness (i.e., unrefreshing sleep, post-exertional malaise, memory and concentration problems). In addition, there were few efforts to devise reliable instruments to assess these core symptoms, and as a consequence, for studies around the world, it was unclear what criteria were being used to identify patients.

Our group wrote about the consequences of this lack of specificity in the case definition (Jason, Richman et al., 1997). One argument that we offered in our writings was that a person with Major Depressive Disorder, one of the most prevalent mental health problems, could be easily misdiagnosed with CFS. Many individuals with depression have chronic fatigue and other somatic symptoms that are part of the CFS case definition (e.g., unrefreshing sleep, joint pain, muscle pain, impairment in concentration). Although we recognized that some individuals with CFS might have comorbid depression, we were also convinced that the two illnesses were distinct. In one of our studies, we recruited individuals who had CFS and Major Depressive Disorder (Hawk, Jason, & Torres-Harding, 2006). Using discriminant functional analysis, we were able to successfully distinguish CFS from Major Depressive Disorders with 100% accuracy if critical predictors such as post-exertional malaise severity, unrefreshing sleep severity, and confusion/disorientation severity were used. In other words it is possible to distinguish these two conditions, but if the current case definition of CFS does not identify patients with these specific symptoms (e.g., post-exertional malaise and unrefreshing sleep), then it would be easy to miss some individuals who really have CFS and to include others who do not have this illness. If this occurred, it would be impossible to identify consistent biological markers of this illness, and then many researchers and clinicians would conclude that ME/CFS was a psychosomatic illness.

In 2003, a new clinical case definition for ME/CFS was developed in Canada (Carruthers et al., 2003). The Canadian case definition uses the term Myalgic Encephalomyelitis/chronic fatigue syndrome (Carruthers et al., 2003). For the first time, specific symptoms were required for a diagnosis (e.g., post-exertional malaise, unrefreshing sleep, a significant degree of arthralgia and/or myalgia, and concentration and memory problems). One of the hallmarks of ME/CFS is muscle weakness following minimal exertion with prolonged recovery time. The extreme post exertional muscle fatigueability and relapse on exertion is quite distinct from what most think of as chronic fatigue or tiredness. In addition, the IACFS/ME in 2006 published guidelines for a new case definition for children and adolescents, using the name pediatric Myalgic Encephalomyelitis/chronic fatigue syndrome (Jason et al., 2006). In 2007, the IACFS changed its official name to IACFS/ME.

In 2003, the CFS Coordinating Committee¹s Name Change Workgroup recommended that it might be best to introduce an umbrella term and subtypes into the field, and clearly, some patients with this illness do have inflammation and others do not (Corradi, Jason, & Torres-Harding, 2006). If there are distinct subtypes within a diagnostic category, samples will not be similar, as they will have different percentages of critical characteristics, symptoms, and biomarkers. Similar to disorders such as cancer, it is highly likely that a number of distinct types exist and that the current method of grouping all individuals who meet CFS diagnostic criteria together is complicating the identification of biological marker that will help scientists unravel the pathophysiology of this illness. The recommendations by the Name Change Workgroup was not endorsed by the CFS Advisory Committee.

Controversy has occurred concerning whether ME should stand for Myalgic Encephalomyelitis or Myalgic Encephalopathy. Shepherd (2007), for example, states that the term encephalomyelitis indicates that widespread inflammatory change taking place within the brain (i.e., encephalitis) and the spinal cord (ie myelitis). Shepherd (2007) suggests that while there might be past or present inflammatory changes within the central nervous system in some patients, there is not evidence of this in all patients. Shepherd (2007) prefers the term encephalopathy which he states refers to the following:

“1. A significant and sometimes diffuse disorder of the brain that can involve both changes to structure and function. 2 A neurological disorder than can be caused by infections (viral, bacterial, prion), metabolic or mitochondrial dysfunction, exposure to toxins (e.g., drugs, chemicals, pesticides), lack of oxygen or blood supply to the brain. 3 A disorder that commonly produces serious disturbances in cognitive function - involving memory, concentration etc. 4 Other neurological symptoms that can be found in an encephalopathy include myoclonus (twitching of muscles or muscle groups), nystagmus (involuntary eye movements), tremor, muscle atrophy and weakness, dysequilibrium (and unsteady gait), paraesthesiae (sensory disturbances), hypothalamic dysfunction, orthostatic intolerance and postural hypotension. 5 More serious neurological symptoms, as described in section 4.2.1.2 of the Chief Medical Officer's report (e.g., seizures), can also be found in encephalopathies. 6 Mood disturbances can occur. 7 Abnormalities can be found on neuroimaging, spinal fluid examination and electroencephalograms - depending on the cause of the encephalopathy.”

However, others point out that encephalopathy is too general and can be any dysfunction or disorder of the brain. The specific objection being that encephalopathy could cover so many different types of brain and/or central nervous system pathologies it wouldn't be respected as the name of a particular disease by the medical community.Moreover, encephalopathy is usually not a stand alone diagnosis but is associated with other conditions. So while many encephalopathy examples may be accurate, the point is that there are many types. Furthermore, from a clinical standpoint, descriptions of encephalopathy often refer to dementia. The hallmark of encephalopathy is altered mental status. While accurate, patients have recognized that this could be problematic. Mental health professionals often argue that the boundaries between mental and physical aren't rigid and that they are very much interrelated. In other words, encephalopathy could be used in a psychiatric context, whether linguistically 'correct' or not. Patients also feel that because there is no definition for Myalgic Encephalopathy, so to promote this term without a definition leaves too much leeway for another broad definition which will allow the "misinterpretation" of the neurological symptoms as "unexplained somatic..." and thereby allow the continued misrepresentation the illness.

Another issue brought up by advocates of Myalgic Encephalomyelitis is that it is not that there is a lack of inflammation but that we do have conclusive evidence to confirm or deny the existence of inflammation. Advocates of Myalgic Encephalomyelitis also state that the name of an illness forms its identity and terminology has never required strict all encompassing scientific accuracy or proof. Malaria means bad air. Lyme is a town. Ebola is a river. The name poliomyelitis is not required to change to polio-opathy after the acute phase. In addition, the name Myalgic Encephalomyelitis has a 50 year history in the medical literature and it has been formally classified by the WHO as a neurological diseases in the ICD since 1969 and remains classified in the current ICD as a neurological disorder (ICD 10 G93.3). In contrast, Myalgic Encephalopathy is not defined as a specific condition and has no ICD status. Many advocates believe that we would lose that 50 years of historical lineage if we endorsed the term. Myalgic Encephalopathy.

Many feel that there is considerable benefit of maintaining the name Myalgic Encephalomyelitis, which is the most consistently used and most widely recognized name worldwide, with an established neurological WHO ICD code and a well documented history of outbreaks along with extensive epidemiological investigations. Researchers and clinicians need to be aware of the strong sentiments that patients have for Myalgic Encephalomyelitis, which is a historically correct (Ramsay, 1981) and has been used internationally (Hyde, Goldstein, & Levine, 1992).

References

Anderson, J. S. & Ferrans, C. E. (1997). The quality of life of persons with chronic fatigue syndrome. Journal of Nervous and Mental Disease, 185, 359-367.

Burns, R. (1998). Responses for CFS name survey two. http://www.cais.net/cfs- news/responses-2.htm

David, A.S., Wessely, S., & Pelosi, A.J. (1991). Chronic fatigue syndrome: Signs of a new approach. British Journal of Hospital Medicine, 45, 158-163.

Carruthers, B.M., Jain, A.K., DeMeirleir, K.L., Peterson, D.L., Klimas, N.G., Lerner, A.M., Bested, A.C., Flor-Henry, P., Joshi, P., Powles, A.C.P., Sherkey, J.A., & van de Sande, M.I. (2003). Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatments protocols. Journal of Chronic Fatigue Syndrome, 11, 7-115.

Corradi, K.M., Jason, L.A., & Torres-Harding, S.R., (2006). Exploratory subgrouping in CFS: Infectious, inflammatory, and other. In A. Columbus (Ed.), Advances in Psychology Research. Volume 41 (pp. 115-127). Hauppauge, N. Y.: Nova Science Publishers.

Friedberg, F., & Jason, L.A. (1998). Understanding chronic fatigue syndrome: An empirical guide to assessment and treatment. Washington, D.C.: American Psychological Association.

Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., & Komaroff, A. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121, 953-959.

Green, J., Romei, J., & Natelson, B.J. (1999). Stigma and chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome, 5, 63-75.

Hawk, C., Jason, L.A., & Torres-Harding, S. (2006). Differential diagnosis of chronic fatigue syndrome and major depressive disorder. International Journal of Behavioral Medicine, 13, 244-251.

Holmes, G.P., Kaplan, J.E., Gantz, N.M., Komaroff, A.L., Schonberger, L.B., Strauss, S.S., et al. (1988). Chronic Fatigue Syndrome: A working case definition. Annals of Internal Medicine, 108,387-389.

Hyde, B.M., Goldstein, J.A., & Levine, P. (1992). The clinical and scientific basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Nightingale Research Foundation. Ottawa, Ontario, Canada.

Jason, L.A., Bell, D.S., Rowe, K., Van Hoof, E.L.S., Jordan, K., Lapp, C., Gurwitt, A., Miike, T., Torres-Harding, S., De Meirleir, K. & IACFS (2006). A pediatric case definition for ME/CFS. Journal of Chronic Fatigue Syndrome, 13, 1-44.

Jason, L.A., Eisele, H., & Taylor, R.R. (2001). Assessing attitudes toward new names for chronic fatigue syndrome. Evaluation and the Health Professions, 24, 424-435.

Jason, L.A., Holbert, C., Torres-Harding, S., & Taylor, R.R. (2004). Stigma and chronic fatigue syndrome: Surveying a name change. Journal of Disability Policy Studies, 14, 222-228.

Jason, L.A., Holbert, C., Torres-Harding, S., Taylor, R.R., Le Vassuer, J.J., Breitinger, P., LaBarbera, D. & Siegel, L. (2004). Chronic fatigue syndrome versus chronic neuroendocrineimmune dysfunction syndrome: Differential attributions. Journal of Health and Social Policy, 18, 43-55.

Jason, L.A., Richman, J.A., Friedberg, F., Wagner, L., Taylor, R., & Jordan, K.M. (1997). Politics, science, and the emergence of a new disease: The case of Chronic Fatigue Syndrome. American Psychologist, 52, 973-983.

Jason, L.A., Taylor, R.R., Plioplys, S., Stepanek, Z., & Shlaes, J. (2002). Evaluating Attributions for an Illness based upon the Name: Chronic fatigue syndrome, Myalgic Encephalopathy and Florence Nightingale Disease. American Journal of Community Psychology, 30, 133-148.

Jason, L.A., Taylor, R.R., Stepanek, Z., & Plioplys, S. (2001). Attitudes regarding chronic fatigue syndrome: The importance of a name. Journal of Health Psychology, 6, 61-71.

Jason, L.A., Torres-Harding, S.R., Jurgens, A., & Helgerson, J. (2004). Comparing the Fukuda et al. criteria and the Canadian case definition for chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome, 12, 37-52.

Name-Change Survey Results (1997). http://www.cfids.org/archives/1998/pre-1999-article15.asp.

Ramsay, M.A. (1981). Myalgic Encephalomyelitis: A baffling syndrome with a tragic aftermath. The ME Association.

Shepherd, C. (2007). What is an encephalopathy? Posting on ME/CFS and Fibromyalgia Information Exchange Forum [CO-CURE@LISTSERV.NODAK.EDU], Feb. 9, 2007.

Shlaes, J.L., Jason, L.A., & Ferrari, J. (1999). The development of the Chronic Fatigue Syndrome Attitudes Test: A psychometric analysis. Evaluation and the Health Professions, 22, 442-465.

Taylor, R.R., Friedberg, F., & Jason, L.A. (2001). A clinician's guide to controversial illnesses: Chronic fatigue syndrome, Fibromyalgia, and Multiple Chemical Sensitivities. Sarasota, Fl.: Professional Resource Press.


Ultra-Brief Self-Management of CFS in Medical Care Fred Friedberg, PhD

 

Physicians and other health care professionals may have difficulty giving behavioral management advice to patients with CFS because: (1) it is not clear what advice should be given; (2) patients may not be receptive to such advice; (3) such discussions may open up emotional issues that professionals are not equipped to deal with in a brief medical visit.

This article will highlight background studies demonstrating the efficacy of behavioral self-management for many illness conditions, including CFS. I will also suggest how physicians and other professionals can advise their CFS patients about healthy lifestyle change and stress reduction in order to lessen illness severity and, for some patients, promote significant improvement.


Self-Management in Medical Care

 

Physicians and practice nurses commonly teach self-management skills to patients with conditions such as arthritis and diabetes using a range of materials and equipment. Much of primary care is, in fact, prescribed self-care1. Consultation times are often used to instruct patients on how to manage their own conditions whether that be through self-administered medication, symptom monitoring or behavioral change.

In fact, CFS patients’ (N=1,073) responses to a service needs questionnaire indicated a preference for self-management services in the treatment of their illnesses2. Of relevance to behavioral self-management, CFS patients do acknowledge an important role for psychosocial factors in their illnesses3.

Despite their apparent preference for self-management, no generally accepted self-management program is available for CFS patients. In addition, patients are often dissatisfied with the care they receive due to disbelief and dismissal by their doctors4. CFS patients may be better served in a medical care setting where a self-management approach is available and delivered with sensitivity using terms such as life interference, improved coping, and stress reduction – an approach that may engender greater credibility than standard psychiatric or mental health care5.


Studies of Behavioral Self-Management

 

Systematic reviews and meta-analyses of over 100 controlled clinical trials6 have found that self-management techniques for behavioral health problems can lead to substantial improvement for a broad range of clinical presentations, including anxiety, depression, and sleep disturbance. Perhaps surprisingly, a meta-analysis of 14 randomized self-management studies for emotional disorders (largely depression and anxiety disorders)6 found no significant differences in average effect size (mean ES = .84) between self-management (largely bibliotherapy) and face-to-face cognitive-behavioral interventions.

Similar to behavioral problems, there is a growing body of evidence to show that, when compared to standard care, self-management approaches for physical illnesses (primarily arthritis, diabetes, and asthma) can provide benefits for participants particularly in terms of knowledge, performance of health behaviors, and self-efficacy7.

Two successful UK-based self-management randomized trials in chronic fatigue (1 session in primary care)8 and CFS (2 sessions in secondary care) 9 provide initial support for the effectiveness of very brief self-management in CFS. Both studies showed significant reductions in fatigue and stress symptoms as well as improved physical functioning. The self-management rationale of these short-duration trials may in part explain their success which in the case of the Powell et al. study 9 was comparable to previous randomized CBT trials in CFS (13-16 sessions; e.g., 10 ).


Prescribing Self-Management to CFS Patients

 

Even in a brief medical visit, physicians can help their patients to improve their functioning and lessen their fatigue. Behavioral suggestions are presented as illness coping and improvement techniques that will help patients to feel and function better. When framed this way, many patients will be receptive to them. Also by structuring the session around achievable behavioral goals, the discussion is less likely to digress into more general emotional issues. These techniques are based on a recent CFS self-management book11.

Relaxation. Because these patients are often highly stressed, initially providing them with a guided relaxation procedure, preferably on a CD or tape, can be very beneficial. Using relaxation once or twice a day is recommended. Many patients, but not all, will report some benefit from guided relaxation. Perhaps 1 in 5 will experience a significant improvement from relaxation alone.

Sleep techniques. Sleep improvement is another important area for intervention. For CFS patients, arranging a 30-60 minute wind down period before bedtime is quite useful. During this time, relaxing activities are scheduled such as a leisurely bath, a relaxation procedure, or listening to soft music. These activities will help to dampen the “tired and wired” feelings that interfere with restful sleep. Also, regular sleep and wake times will promote a healthier sleep-wake pattern. Frequent awakenings are handled with brief relaxation techniques such as breathing focus.

Activity Management. Activity management is also critically important. Many patients deplete their energies by trying to do too much, such as over-exercising, helping others at the expense of one’s own well-being, and doing activities to exhaustion. The professional helps patients to understand that their efforts to maintain high functioning are understandable, but with CFS, their bodies can no longer tolerate such levels of exertion. Reducing current exercise to levels that do not exacerbate symptoms can be achieved through a collaborative discussions and home trials.

For those who are not exercising, a low level walking schedule can increase tolerance of physical activity. Start with 5-10 minutes a day of low intensity walking (indoor or outdoor; slow treadmill is OK) and increase by 5-10 minutes after 1 to 4 weeks. Unlike obligatory daily walking intended to fulfill responsibilities (work, home, family), this type of exercise is voluntarily scheduled by the patient. It is time that the patient reserves for herself/himself. The principle of self-directed voluntary walking gives the patient a sense of control or self-efficacy – which is important to re-establishing more general illness control. Gradual low level exercise will benefit about 1 out of 2 patients.

Pleasurable events. Finally, encouraging the patient to schedule pleasant activities that generate feelings of uplift will help to counteract illness burdens. Low effort leisure activities, such as watching ducks on a pond, listening to an inspirational speaker, enjoying a special moment with a close friend are all in the realm of potentially uplifting activities. A decade old study12 found that those CFS subjects with the highest levels of positive experiences over a one year period showed significant reductions in fatigue, anxiety, depression, and impairment.

These techniques in combination are likely to help your CFS patients to improve functioning and reduce symptoms. A more in depth description of these behavioral programs may be found in Friedberg (2006)11.

References 1 Lorig, K., Holman, H., Sobel, D., et al. (1993). Living a healthy life with chronic conditions. Palo Alto, CA: Bull Publishing Company. 2 Jason LA. Ferrari JR. Taylor RR. et al. (1996). A national assessment of the service, support, and housing preferences by persons with chronic fatigue syndrome. Toward a comprehensive rehabilitation program. Evaluation & the Health Professions. 19:194-207. 3 Friedberg, F., Dechene, L., McKenzie, M. J., & Fontanetta, R. (2000). Symptom patterns in long-duration chronic fatigue syndrome. J Psychosom Res, 48, 59-68. 4 David, A. S., Wessely S., & Pelosi, A. J. (1991). Chronic fatigue syndrome: Signs of a new approach. British J Hosp Med, 45, 1 158-63. 5 Noboru, K., Good, G. E., & Sherrod, N. B. (2000). Emotional openness as a predictor of college students’ attitudes toward seeking psychological help. J Counseling Psychology, 47, 138-143. 6 Den Boer, P. C. A. M., Wiersma, D., & Van Den Bosch, R. J. (2004). Why is self-management neglected in the treatment of emotional disorder: A meta-analysis. Psychological Medicine, 34, 959-971. 7 Barlow, J., Wright, C., Sheasby, J., Turner, A., & Hainsworth, J. (2002). Self-management approaches for people with chronic conditions: A review. Patient Education & Counseling, 48,177-187. 8 Chalder, T., Wallace, P., Wessely, S. (1997). Self-management treatment of chronic fatigue in the community: A randomized controlled trial. British Journal of Health Psychology, 2, 189-197. 9 Powell P., Bentall, R. P., Nye, F. J., & Edwards, R. H. (2001). Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome. British Medical Journal, 322, 387-90. 10 Prins, J.B., Bleijenberg, G., Bazelmans, E. et al. (2001). Cognitive behavior therapy for chronic fatigue syndrome: A multicentre randomized controlled trial. Lancet, 357, 841-847. 11 Friedberg, F. (2006). Chronic fatigue syndrome and fibromyalgia: 7 steps to less pain and more energy. New Harbinger: Oakland, CA. 12 Ray, C., Jefferies, S., & Weir, W. R. C. (1995). Life events and the course of chronic fatigue syndrome. British J Med Psychology, 68, 323-331.



The IACFS/ME Bulletin is the Official Publication of the International Association for CFS/ME (IACFS/ME), and is provided to association members and friends. All rights reserved. This publication is protected by United States copyright and other intellectual property laws and may not be reproduced, rewritten, distributed, re-disseminated, transmitted, displayed, published or broadcast, directly or indirectly, in any medium without the prior written permission of the IACFS/ME.

Please direct any comments to admin@iacfsme.org or IACFS/ME, 9650 Rockville Pike, Bethesda, MD 20814 (telephone number: 301.634.7701)