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Chronic Fatigue Syndrome A Blessing or a Curse for the Primary Care Physician? Stephen J. Gluckman, M.D.

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Presentation on theme: "Chronic Fatigue Syndrome A Blessing or a Curse for the Primary Care Physician? Stephen J. Gluckman, M.D."— Presentation transcript:

1 Chronic Fatigue Syndrome A Blessing or a Curse for the Primary Care Physician? Stephen J. Gluckman, M.D.

2 Chronic Fatigue Syndrome Why have a lecture on it in a conference on infectious diseases? –Often misdiagnosed and mistreated as an infection Incorrect management can be costly and occasionally dangerous Fatigue if a very common patient complaint in most of our offices

3 Case A 28 year old housewife who has a previously unremarkable medical history had the acute onset of fever to 103, headaches, myalgias, and a non- productive cough 18 months ago. All of the symptoms resolved over the subsequent 10 days with the exception of profound fatigue which has persisted since that time.

4 Case (cont.) The fatigue waxes and wanes in intensity but is always there. It is worse after physical activity; she had to stop her part time job as a bookkeeper. She states that prior to the onset of her illness she used to go the gym 3 times a week but has had to give that up.

5 Case (cont.) Additional symptoms have included –Intermittent sore throat –Generalized body aches –Mental “cloudiness” –Intermittent “swollen glands” –Difficultly sleeping –Blurry vision –Tingling in her hands and feet

6 Case (cont.) Over this time –Her weight has increased 10 pounds –Her menses have been normal –Her hemoglobin has been no lower than 11.8 gm/dl –Her serum albumin has been normal

7 Case (cont.) She has been evaluated by –Her primary care physician –A Neurologist –Two rheumatologists –An otorhinolaryngologist –A nutritionist –A psychotherapist

8 Case (cont.) She has been treated with –Erythromycin twice –Cephalexin twice –Augmentin three times –Ciprofloxacin –Intravenous ceftriaxone –Oral nystatin –Loperamide –High doses of vitamins and a restriction diet

9 Case (cont.) She generally has had transient responses to each of these medications, but her symptoms return within 1-3 days of stopping them At times she has been told that she has –Chronic EBV –Lupus –Lyme disease –Yeast –A nutritional imbalance –Allergies

10 CFS Is EXHAUSTING for patients and can be for their physicians Can be managed successfully by patient and skillful clinicians SUCCESSFUL MANAGEMENT IS ACTUALLY VERY REWARDING

11 Fatigue Chronic fatigue syndrome is not the same as chronic fatigue –Chronic fatigue 25-30% of patients seeing a primary care provider report fatigue Point prevalence about 5% –CFS Incidence is unclear but point prevalence is probably in the range of about 0.1-0.2%

12 CFS: Revised CDC case definition 1. Clinically evaluated, unexplained persisting or relapsing fatigue that is of new or definite onset; is not the result of ongoing exertion; is not relieved by rest; and results in substantial reduction in previous levels of occupational, education, social, or personal activities. PLUS

13 CFS: Revised CDC case definition Four or more of the following symptoms that persist or recur during six or more consecutive months and do not predate the fatigue –Self reported impairment in memory or concentration –Sore throat –Tender cervical or axillary lymph nodes –Muscle pain –Multiple joint pain without redness or swelling –Headache of a new pattern or severity –Unrefreshing sleep –Post-exertional malaise lasting > 24 hours

14 CFS: Revised CDC case definition Modifications –Excluded Patients with psychoses Patients with substance abuse –Included Fibromyalgia Somatoform disorders Generalized anxiety/panic disorder

15 CFS: Case Definition BUT It is important to not get overly “hung up” on the CDC case definition when managing a patient –This is an epidemiology/research tool, not a clinical tool.

16 CFS Complicated and controversial BUT –It is not a new phenomenon –It is a “real” illness –We know a great deal about it A health care provider can not effectively manage patients with CFS if he or she has doubt about the validity of the patient’s symptoms!

17 CFS: Epidemiology Young to middle age adults More common in women than men Fewer cases in minorities Fewer cases in lower socioeconomic groups Usually sporadic and “non-contagious”, but has occurred in outbreaks BUT it occurs in all ages, races, socioeconomic groups

18 What do we know about prognosis? Disability variable Often cyclical course Most improve Few completely recover Recovery takes years Earlier treatment (symptom management) associated with better prognosis

19 Chronic Fatigue Syndrome Historical Perspective It is not a new disease It is a newly (relatively) named disease

20 CFS: Historical Perspective 1770Febricula 1871DaCosta’s (effort) syndrome 1880’sNeurasthenia –Sir William Osler writing in 1895 “in all forms there is a striking lack of accordance between the symptoms of which the patients complain and the objective changes discoverable by the physician” Principles and Practice of Medicine

21 CFS: Historical Perspective 1934 Myalgic encephalitis 1930-50’s Chronic brucellosis 1985 Chronic EBV 1980-90’s –CMV –HSV –HHV6 –Yeast –Total allergy syndrome –Chemical sensitivity syndrome –Chronic Lyme disease 2000’s –XMRV

22 CFS: Etiology Considerations Viral –Many viruses have been proposed, but none have been scientifically linked to CFS –XMRV Endocrine-Metabolic –Variable, mild hormonal abnormalities have been reported

23 CFS: Etiology Immune Dysfunction (CFIDS) –There is evidence of some immune differences in patients with CFS, but the significance is unclear Diverse Modest Inconsistently present Conflicting

24 CFS: Etiology Autonomic nervous system dysfunction? –Neurally mediated hypotension (Positive tilt table testing) Suggestive studies, but none placebo controlled, blinded, randomized No consistent response to treatments for this disorder

25 CFS: Etiology Psychological? –Increased psychopathology in patients with CFS –Lack of objective abnormalities despite severe symptoms –Restricted patient profile –Responds to placebo

26 CFS: Organic or Psychological? Does it matter if the origin is physical or psychological? Not much –If it is organic we do not have a diagnostic test or specific treatment –If it is psychological it does not make it less real or less valid.

27 CFS Pathophysiology What’s Hot? XMRV –Not found in subsequent studies –Do not treat with medications for HIV Genetic –CFS has been linked to genes involved in the immune and stress responses –These findings suggest that patients with CFS have a biologically determined difficulty managing stressors

28 CFS Pathophysiology What’s Hot! Genetic –CDC Study (N=227 with matched controls) Different levels of expression of genes with roles in the hypothalamic-pituitary-adrenal axis and the sympathetic nervous system * –(N=43 with matched controls) DNA sequence changes in three genes associated with brain function, stress reactions and emotional responses** *Smith AK, et al Pharmacogenomics. 2006 Apr;7:387-94. **Goertzel BN, et al Pharmacogenomics. 2006 Apr;7:475-83

29 CFS How can we diagnose something without a diagnostic test? –There is a characteristic history –There is a characteristic physical examination –There are characteristic test results

30 CFS: Characteristic History Sudden onset of fatigue often associated with a typical infection such as a URI or mononucleosis After resolution of the initial disease the patient is left with chronic fatigue and several additional symptoms Physical activity exacerbates the symptoms

31 CFS: Characteristic History Pre-CFS history of the patient is NOT one of multiple somatic complaints. –They are not hypochondriacs. They have been highly functioning individuals who are “struck down” with the disease

32 CFS: Characteristic Examination Normal examination –Including Mini Mental Status Exam (MMSE)

33 CFS: Characteristic Clinical Features Specific points to emphasize –Though patients often complain of fever, very few have significantly elevated temperatures “I run low temperatures normally” –Joints may ache, but there is no objective evidence of joint disease –Though muscles fatigue easily, strength is normal as is EMG and muscle biopsy –Lymphadynia is common, lymphadenopathy is rare

34 CFS: Characteristic Laboratory Results Normal –CBC –Chemistry screen –TSH –Sedimentation rate –Other tests?: ONLY WITH CLINICAL INDICATION

35 CFS: Diagnosis DO NOT ROUTINELY DO: –Serology for CMV EBV Toxoplasmosis Lyme disease ANA –Expensive neuroimaging –Tilt table testing

36 CFS: Diagnosis If the patient has a typical story, negative physical examination, and negative screening tests we can make the diagnosis.

37 CFS Concepts To Remember For Successful Management Patients with CFS are partially or completely disabled. Their outward healthy appearance belies an internal sense of ill health. It is common for friends, relatives, employers, and physicians to believe they are malingering or their symptoms are not “real”. This results in anger, frustration, and a need to justify their illness

38 CFS: Specific steps in Management 1.Give the patient enough time and do a thorough evaluation 2.Reassure the patient that the symptoms are real 3.Discuss problem of patient having to deal with the validity of his/her disease 4.Do not underestimate the benefits of trust, support, and reassurance that you can provide

39 CFS: Specific steps in Management 5. Explain to the patient that this is not a new disease – we know a lot about it –Review the history of CFS in detail 6. Avoid the debate over psychogenic v organic origin 7. Review treatment options

40 CFS So what are the treatment options? 1.Tell the patient that there is no cure for CFS, but there are treatments that help 2.“Re-frame” expectations – the patient has a disability and should have appropriate expectations 3.Encourage graded exercise –Inactivity contributes to deconditioning and depression 4.Suggest Cognitive Behavioral Therapy 5.Treat depression aggressively

41 CFS: Treatment Options (cont.) 6.Treat insomnia aggressively 7.Treat other “treatable” conditions –Do not assume that every symptom is CFS related –Caution patients about this 8.Options for fibromyalgia -Physical therapy -Duloxetine (Cymbalta ® ) -30-60 mg per day -Amitriptyline (Elavil ® ) -12.5-50 mg per day -Pregabalin (Lyrica ® ) -150-450 mg per day -Topiramate (Topamax ® ) -25-200 mg per day

42 CFS: Treatment Options (cont.) 9.Orthostatic intolerance -clonidine 0.1 mg nightly -midodrine 10.Fatigue -methylphenidate (Ritalin LA ® ) -modafinil (Provigil ® ) 11.Reassure about prognosis

43 CFS: Treatment Options (cont.) 12.See at regular intervals 13.Caution about unproven, dangerous or expensive treatments 14.Offer CDC pamphlet, website and hotline –404-639-1338

44 CFS: Management Unproven and Disproved Therapies Ampligen Essential fatty acids Magnesium Bovine liver extract Acyclovir Folic acid B12 Interferon Exclusion diets IVIG Removal of dental fillings IL 2 Cimetidine Ranitidine Evening primrose Many antibiotics Corticosteroids

45 CFS: Management Accept the fact that you will not be able to successfully manage all patients with CFS but avoid the temptation to give unnecessary treatments.

46 Questions?

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