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Dear Doctor:

 Your patient has been diagnosed with CFS/ME, otherwise known as Chronic Fatigue Syndrome, or Myalgic Encephalopathy.  We are delighted to manage this complicated condition and provide you with regular progress notes.  We hope that you will continue to provide routine medical care, and assist us as well.  This overview is provided as a brief explanation of the illness and how you can help.

 

CFS/ME Is Characterized By…

Exertional fatigue and malaise; pain in muscles and joints or headache; cognitive dysfunction (poor recall, short term memory loss, inability to focus); and disrupted or non-restorative sleep.

Patients characteristically experience exhaustion with minimal activity; weakness and dizziness with sitting or standing; hypersensitivity to light, sound, smell, touch, temperature extremes, and medications; and stress intolerance.

Symptoms of low energy and malaise, non-restorative sleep, and cognitive dysfunction are resistant to medication, and these symptoms will be both pervasive and daily.

CFS/ME is associated with numerous vague and unusual symptoms (see box below), but do not assume that a symptom is due to CFS/ME alone. 

Relapses of CFS/ME are frequently idiopathic, but can predictably be triggered by SOS:  Stress (or infection), Over-exertion, and Sleep deprivation.

Physical examination is mostly normal but many patients will exhibit fibromyalgia tenderpoints, low blood pressure, shoddy cervical lymphadenopathy, supraclavicular fullness, sacro-iliac joint tenderness, difficulties with balance and stance.

Routine laboratory tests are usually normal but you may note a moderately low WBC, atypical lymphocytosis, low sedimentation rate, and low level autoantibodies to thyroid, nuclear antigen, etc. 

CFS/ME involves multiple systems, notably the central and autonomic nervous systems, the HPA Axis, the immune system, and sleep.

bulletCranial MRI will show small T2 weighted high intensity lesions in 80% of cases
bulletTilt table testing frequently demonstrates orthostatic intolerance, Postural Orthostatic Tachycardia Syndrome, or Neurally Mediated Hypotension (syncope)
bulletHPA Axis suppression leads to low CRH, low 24 hour cortisol, low DHEA, variable TSH levels (use Free T4 and/or T3 to monitor thyroid), and reduced sex hormones. Cortisol replacement is not recommended, but repletion of other hormones may be helpful.
bulletSubsets of patients have poor killer cell function, low CD8 cells, or low immunoglobulin subclasses leading to recurrent respiratory, viral, or fungal infections
bulletMore than 60% of patients have an abnormal sleep study, typically long sleep latency, reduced slow wave and REM sleep, periodic leg movements or myoclonus, fractured sleep, or obstructive sleep apnea

 

PWCs (Persons with CFS/ME) Are Advised To:

Take frequent rest breaks during the day

Limit activity to short periods of time, followed by a rest break

Maintain a low level activity program, typically 3-5 minutes of walking, biking or swimming followed by a 5 minute rest, and repeated as tolerated

Pick a fixed wake time and follow a daily routine or schedule

Maintain a prudent balanced diet  

 


Keys Elements of Treatment

Minimize time spent in office visits by considering only 1 or 2 top complaints per visit

Recognize that there is no specific treatment for CFS/ME. Management is supportive and symptomatic.

Treat major symptoms first, that is sleep, pain, orthostatic intolerance.

Allergies and reduced levels of Vitamin D, estrogen, and testosterone are common and should be addressed.

Significant depression must be treated, and supportive counseling is recommended.

Never assume that a new symptom or a change in course is due to CFS/ME. Rule out other medical causes first.

 

Prognosis

Best prognostic signs are a positive attitude and the absence of depression; compliance with pacing, limit setting, and a regular low level activity program. Medications only palliate symptoms.

Negative prognostic signs include depression, difficult personal situations (stress),  absence of support, attribution to a specific physical illness (e.g. a virus, weak immunity), and especially repeated over-exertion with relapse.

85% of our patients improve. Over time more than half are capable of returning to work or school; but very few return to full time employment.

Recovery takes years.

 

How The Primary Care Physician Can Help…

Care for routine medical problems

Support our recommendations (or call to question them!)

Evaluate new symptoms or deterioration in function for the possible onset of other illnesses

Provide empathetic support for patient, family and significant others

Refer the patient to our office if not doing well 

CFS is...
Symptoms
Aspects
Relapses

Physical
Lab
Systems

PWCs Advised
Pacing
Limit Setting
Activity
Schedule
Diet

Key Therapies

Prognosis
Positive signs
Negative signs
Prognosis
Time course

PCP can help
Routine care
Support
Evaluation
Empathy
Referral

 


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