Here's a transcript of Dr. Lapp's presentation at the Grand Rounds on February 16
4:25> Let me start by saying that in 1991, one of my colleagues, David Bell, wrote a book entitled the disease of a thousand names. And that title sort of exemplifies the confusion we have had about this illness. The signs and the symptoms are so general and diverse that chronic fatigue syndrome mimics many other disorders.
And has earned numerous monikers over the years: Royal Free Disease, Iceland Disease, Tapanui Flu, “Yuppie Flu”, by the way that came form the eminent medical journal Rolling Stone Magazine. Its also been called Myalgic encephalopathy (note the slide said encephalomyelophathy), chronic fatigue immune dysfunction syndrome, and more recently SEID which stands for systemic exertion intolerance disease.
For this presentation however, we will be using the more common which was chosen because 100% of the study subjects experienced an unusually severe and persistent type of fatigue.
Now there’s no explanation why individuals contract chronic fatigue syndrome but we do know that the majority of cases occur acutely over hours to days and typically follow a bacterial or viral type illness.
NOTE this next section had a picture of a woman laying down on a laptop that is covered with stickies.
5:55> So let me introduce you to a typical clinical case. And this is an actual case from my practice. Jane was a 37-year-old internet technologist with a community bank. She had been physically active in sports and working out and had been maintaining her own household when she contracted a flu-like illness in 2011. She was bedbound at first and very slow to recover. Within days she noticed an unusual fatigue after minimal activity then insomnia, then achiness of the joints and generalized muscle pain and weakness. She soon found it difficult to recall recent conversations and events.
Reading concentration was limited and she had trouble comprehending what she had read or even TV shows that she had watched. She would search for words, loose her train of thought and friends would sometimes have to finish sentences for her. Sleep had always been good but now she was restless at night and she would awaken unrefreshed even after many hours of bedrest. She got stiff and sore and foggy for an hour or two after the awakening. She noticed dizziness or lightheadedness on getting up quickly and on a couple of occasions, she saw stars but no tunnel vision, no syncope.
Now she was unable to keep up the house and she had to rely on friends and family to help her with the cleaning, the laundry, and the shopping. She would attempt to keep up at home and at work but exertion would inevitably make the symptoms worse and if she exerted too much, she would end up sick and chair bound for one or two days afterward.
Evaluation by her primary care physician revealed rather low blood pressure but there was no immediate orthostatic blood pressure drop and otherwise the examination was unremarkable. Blood work was unremarkable. Having no explanation for her symptoms despite the profound reduction in her physical abilities, Jane became anxious about her future and frustrated and discouraged as well.
8:00> So our clinical case demonstrates all the key features of chronic fatigue syndrome
· Exertion intolerance and debilitating fatigue
· Post-exertional relapse and malaise
· New onset of sleep problems
· Cognitive difficulties
· Orthostatic intolerance (slide listed dizziness, lightheadedness upon standing up)
· Symptoms wax and wane
· Whole body flu-llike myalgias, arthralgias, or widespread body pain
8:29> Now the cause of exertion intolerance, pain, sleep disruption, cognitive dysfunction and other cfs symptoms is unknown. But there is an identifiable trigger in a majority of cases that we see. A large majority of patients report a precipitating factor hours to days before their symptoms begin. The largest category is preceding infections although a variety of other medical and surgical events can occur before the onset of CFS. CFS is triggered by viral or bacterial infection in about 75% of cases that we see and non-infectious trauma, surgery or trauma, allergic reactions, stress or emotional trauma occur in much smaller numbers.
There’s some evidence that high levels of concurrent stress may contribute to the precipitation of chronic fatigue syndrome. Now the typical course is a roller coaster ride of flares alternating with relative improvement while overexertion, sleep deprivation and emotional stress are well-known to trigger the flares, many relapses occur spontaneously and they last for an indefinite period of time.
The unpredictable onset and the severity of such relapses make it difficult for a person with CFS to plan ahead or to function on a regular, predictable or sustained basis. Clinical management contributes to some functional improvement but total recovery is uncommon and most adults do not return to their pre-illness level of function.
10:05> Now individuals with cfs are more likely than the general population to suffer comorbidities such as fibromyalgia, irritable bowel and bladder, sjogren’s syndrome, joint hyperextensibility or Ehlers-Danlos syndrome and several other medical conditions. Sadly however, its an invisible illness and to the causal observer, patients appear entirely normal and healthy. But the gravity of the disease is such that it totally changes one’s lifestyle and the lives around that patient as well. One of my patients pointed out to me and I make this a quote “ this illness can take away everything, your dignity, your livelihood, your family, your marriage and even all of your money.
11:00> So as you can imagine, the symptoms of chronic fatigue syndrome overlap with many disorders including depression, MS, systemic Lupus, endocrine disorders, hepatitis and many other illnesses. So in order to confirm a diagnosis of chronic fatigue syndrome, one needs to exclude disorders that could plausibly explain the exertion intolerance and the other symptoms.
The essentials of evaluation include as you see here a thorough medical history, a thorough psychosocial history (such as a history of dysfunctional childhood, prior verbal or physical abuse, substance abuse), a complete physical examination, a mental health examination perhaps using validated screening such as the HADS (Hospital Anxiety and Depressiion Scale or the Patient Health Questionairre (PHQ8). Such an evaluation typically takes about 30-60 minutes in my office.
Lastly its recommended to obtain basic screening laboratory tests. They may include a CBC with a white blood cell differential, blood chemistries such as a comprehensive metabolic panel, thyroid function tests such as the TSH and the free T4, a sedimentation rate and/or a CRP which of course are markers of inflammation and a routine urinalysis. Now sometimes additional labwork is obtained if clinically indicated of course to rule out other possible causes of fatigue such as infection, authoimmune disorders, endocrine or ?? problems, celiac disease, etc. The results of such testing is usually unremarkable but it does help rule out those other conditions that could plausibly explain the fatigue and the other symptoms.
12:45> Dr. Komaroff will soon be explaining the institute of medicine recommendations. But suffice it to say at this point that the IOM recommends making the diagnosis actively and that means its important to make the diagnosis promptly even before one excludes other plausible causes.
The IOM criteria for systemic exertion intolerance disease or SEID provides a brief and simple method for diagnosing CFS but many clinicians including myself corroborate the diagnosis with established instruments such as the Fukuda Criteria of 1994 or the Canadian Consensus Criteria. Making the diagnosis promptly reduces anxiety and uncertainty for the patient and reduces medical costs because numerous exclusionary lab studies and procedures would not be needed.
13:39> So let’s consider the prognosis for these patients. In a systemic review of the natural course of CFS, a median of 39.5% of adults with CFS improved and a median of 5% experienced complete recovery. The likelihood of recovery decreases with baseline level of severity, the duration of the illness, and the presence of comorbid psychiatric conditions. Children and adolescents fare somewhat better with one paper reporting 60% recovery at 5 years and 88% at 12 years after the onset of their illness. In another longitudinal study of 25 adolescents with CFS compared to 25 healthy controls, 80% of the patients had remitted over 25 years but many of the patients reported more impairment than the controls.
14:35> Now the management of chronic fatigue syndrome can be briefly summed up by these four pillars if you will: Education, Behavioral change, medication and non-medication based treatment. First, reliable education material should be provided to the patient and an excellent source is online at the CDC website: CDC.gov/CFS. Behavioral modification has been effective to limit depression, anxiety and abnormal coping mechanisms such as denial and escape avoidance.
Pharmacologically, sleep disruption and pain are usually addressed first and may require consultation with a sleep specialist or a pain management group. We usually avoid narcotic pain medication but helpful therapies include tricyclics such as amitriptyline and cyclobenzaprine, the NSRI (sp?) such as duloxetine and nolnasapren (sp?) and antiepileptic medications like pregabalin. The next step in management is to address severe symptoms and to address those comorbidities that the patients suffer. Non-pharmacological therapy might include Epsom soaks, hot or cold packs, liniments, massage, osteopathic manipulation, acupuncture and the like.
16:00> Another form of non-pharmacological therapy is staying active but not too active. We recommend starting with very low levels of activity and proceeding slowly. Brief intervals of activity should be followed by adequate rest in order to avoid a flare of symptoms or to avoid the post-exertional malaise. Consider beginning with active stretching and range of motion exercises against gravity and then follow with light resistance training with light weights for example or elastic bands.
We then advance to certain types of aerobic activity such as tai-chi, yoga, walking, bicycling or aqua therapy. To avoid flares, patients should limit activity by time, say 5 minutes per day to start and limit the number of repetitions. If they experience any excessive fatigue, reduce the amount of time or the number of repetitions.
· NOTE the reference for this section is
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http://www.cdc.gov/cfs/management/managing-activities.html
· The Seventh Annual AACFS International Conference 2004, Madison, Wisconsin
17:00> So the summary from the clinical aspect is that we can find chronic fatigue syndrome present in both pediatric and adult groups, it typically has a preceding medical event, often infection, patients benefit from earlier, comprehensive evaluation and diagnosis, the disease can have severe impact on quality of life but improvement and recovery are certainly possible and there’s no curative therapy but graded exercise and some kinds of pharmacological therapy can be of great benefit.