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What a primary care doctor can do for CFS patients — Recommendations by James Oleske, M.D., M.P.H.

Dr. James Oleske, a Professor of Pediatrics at the University of Medicine and Dentistry, Newark, New Jersey, in his talk of October 17, 2010 explained his theory of the multi-causality of Chronic Fatigue Syndrome (CFS) and also described some specifics for what a primary care doctor working with a CFS patient can and should do. These recommendations cover the initial evaluation, specialized studies, treatments, and the structure of an overall care plan, and may be helpful as a starting point for discussion and planning between patients and their physicians. He spoke at the New Jersey Chronic Fatigue Syndrome Fall Conference, October 17, 2010.

Dr. Oleske emphasized that even if a physician has not had much experience evaluating and treating CFS patients, there is still much that s/he can do for the patient. A summary of Dr. Oleske's recommendations and remarks, are as follows:

Initial evaluation of the patient

  • Review previous medications, patient records, medical reports, and laboratory test results. Often the patient has taken great effort to assemble records from visits to other providers, and these records will often contain very useful information. Also, duplicate testing may often be avoided if results of earlier tests can be utilized.
  • Take a detailed history, including past history of other fatigue-like illnesses, significant psychiatric illness if any, a detailed review of systems, and determine what pattern of illness the patient has been experiencing.
  • Perform a thorough physical examination. A physical examination may reveal issues that explain some of the symptoms.
  • Lab studies should include a CBC with SED rate, chemical profile, thyroid function test, ANA, UA, EKG, chest x-ray, intermediate strength PPD, and if the patient has a fever over 101 degrees, include blood cultures.
  • Other studies may also be indicated, such as CAT or MRI brain scan or psychological testing.

Further evaluation should include:

  • A follow-up of any abnormalities found on the initial workup to determine if there are other causes of chronic fatigue or other symptoms
  • Appropriate referrals to specialists after the initial workup
  • Immune Dysfunction testing (often available only through research centers and Immunology physicians) to look for infectious agents such as EBV, HHV-6, and other humeral immune evaluations (IgG, IgM, IgA, IgE, IgG subclass, T-cell subset evaluation), and innate immune responses (anti-inflammatory mediators, lymphokines). Finding a center to do this testing may be difficult because despite the recommendation coming repeatedly from the CFS Advisory Committee, Centers of Excellence for CFS still have not been created and funded

Treatment Plan. A treatment plan for CFS must first address treating the symptoms to improve the patient's quality of life.

Symptoms which can often be well-managed by standard approaches include:

  • Pain
  • Allergy
  • Sleep disturbances
  • Fatigue, by helping the patient achieve a balance of rest and activities

Specific investigational therapies (if available) may include:

  • Anti-viral
  • Immunoglobulin
  • Anti-inflammatory
  • Anti-cytokine

Finally, it is important to structure a Long-term Care Plan, based on a chronic illness model of care. Important items to include are:

  • Reasoned laboratory evaluations
  • Reassurance
  • School or workplace accommodations such as
    • Individualized attendance and start times
    • Increased time for assignments and exams
    • Access to home study or work
    • Adjusted physical activities
    • Accommodation for physical limitations
    • Flexibility of course or work requirements
    • Sympathetic administration/educators/managers. Not sympathetic in the sense of feeling sorry for the patient, but in the sense of working toward effective means of improving the patient's quality of life and ability to function.

Dr. Oleske asks physicians to consider "What is health-related quality of life?" He said it recognizes the multi-dimensional nature of health and brings together physical, psychological and social domains that influence health status. It reflects a transition from measuring mortality to understanding morbidity, but there is no one accepted definition. Quality of life domains include:

  • Social
  • Psychological
  • Physical (including general health)
  • Disease symptoms

Special issues in assessing quality of life in children include the following

  • Changing developmental level
  • Adjusting for age
  • Sensitivity to changes in health status
  • Use of proxy respondents (e.g. parent or other family member speaking for the child)
  • Asking the child directly
  • Comparison with normal population (scientific studies of "normal" are rare)

Why is assessing quality of life important?

  • It provides descriptive information about health status
  • It helps identify individuals with differing morbidity levels
  • It offers patient and family perspectives on the impact of the illness and treatments

When multiple treatment regimens are available, quality of life assessment may be a factor in treatment choice. Understanding the relationships among disease, symptoms, treatments, and social factors is critical to providing optimum care.

Dr. Oleske closed his talk with a quote from Aesop: "No act of kindness, no matter how small, is ever wasted."

More Resources

For further information about diagnosis, see the 2003 Canadian Definition, Pediatric Case Definition, as well as the Differential Diagnoses articles.

For more information about CFS/ME symptoms and their frequency, see the list compiled by Paul Cheney MD (the Cheney Clinic, specializing in CFS/ME), Anthony Komaroff MD (the Harvard Medical School), Charles Lapp MD (Hunter-Hopkins Center, specializing in CFS/ME)) and Daniel Peterson MD (Whittemore-Peterson Institute for Neuro-Immune Disease), by clicking on Symptoms Checklist.

For comments on the confusion concerning the role of psychological conditions in CFS/ME, see the article by psychiatrist Alan Gurwitt MD, On the Morbid Fascination with Psychiatric Morbidity and a summary of an article by Anthony Komaroff MD in The American Journal of Medicine, Differences between CFS and Major Depression.

Other articles in the Differential Diagnoses section address differentiating between CFS/ME and various specific psychological conditions, such as depression.

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