Ask the Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Doctor
Dr. Podell is a clinical professor at New Jersey's Robert Wood Johnson Medical School with special interests in CFS & Fibromyalgia
Ask the Doctor: What is the difference between narcolepsy and CFS?
Answered by Richard Podell, M.D., MPH www.DrPodell.org
Q: What is the difference between narcolepsy and CFS?
A: Narcolepsy is a neurological condition where people have severe daytime sleepiness despite having had a reasonable amount of sleep. People with narcolepsy typically are asleep within less than eight minutes after lying down. Or they can fall asleep suddenly without intending to.
People with narcolepsy do not typically suffer from the kind of poor stamina we see with the fatigue that is typically for CFS/ME. Nor do narcoleptics typically become much worse for many hours or days following modest degrees of physical activity.
Persons with CFS/ME are almost always tired, but are not necessarily sleepy. They can be sleepy of course, but severe, profound daytime sleepiness despite a reasonable amount of sleep is not typical for most people who have CFS/ME.
When people with CFS/ME are sleepy during the day despite having slept it’s important that the physician consider several potential causes including sleep apnea, periodic leg movement disorder, the sleep distorting effects of chronic pain and psychological distress. Narcolepsy can co-occur with CFS/ME but that coincidence is not common.
One of the judgments physicians have to make with CFS/ME patients is whether to refer to a sleep specialist for an overnight sleep study or other evaluations.
Most people with narcolepsy suffer from a deficiency of a brain neurotransmitter called hypocretin. Hypocretin promotes wakefulness. The medicines Provigil (modafanil) and Nuvigil act to increase hypocretin. These help people with narcolepsy stay awake.
I and other CFS/ME specialists have found that a significant minority of people with CFS/ME feel more awake and mentally alert with Provigil or Nuvigil even though they do not have narcolepsy. Because these medicines work within hours, I often recommend a one or two day trial. However, Provigil and Nuvigil usually do not help physical stamina. Both are controlled substances.
Richard Podell, M.D., MPH
Clinical Professor Rutgers -Robert Wood Johnson Medical School
Summit, NJ 07901
More Q & A's
Ask the doctor: Why is there so little research into CFS-ME? Why don’t we get respect?Answered by Lucinda Bateman
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Q: Why is there so little research into CFS-ME? Why don’t we get respect?
A: Although lack of respect has certainly played an important role in the slow progress of ME/CFS research, the full story is more complex. Research funding is based on promising hypotheses and well-designed studies that show convincing objective results, along with institutional biases, pharmaceutical pressures, the track record of each investigator and numerous other factors. Good results are more likely when we can clearly define the problem at hand and come up with reliable ways to measure it.
This field has been mired down with so many problems--- unclear or overlapping case definitions, small uncontrolled studies with mixed or un-replicated results, and the lack of a medical and scientific “home” are just a few.
Regardless of the frustrating problems so far, I predict that the research environment will change fairly quickly over the next few years due to intense discussion of case definitions, promising new biomarkers, the voices of public advocates and efforts by federal institutions to change old stereotypes.
Do I have to live the rest of my life like this?Answered by Dr. Charles Lapp
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Q: Do I have to live the rest of my life like this?
A: ME/CFS is considered a chronic illness, but longitudinal studies suggest that 17-64% of adult PWCs improve, less than 10% fully recover. The improvement rate is even better for adolescents with ME/CFS. The current standard of therapy is to treat sleep and pain issues first, then address co-morbidities or other health issues.
Dr. Bruce Campbell and I agree (TreatCFSFM.org) that it is best to assume the worst at first, and work toward improving. PWCs seem to do best when they accept the illness and adapt to it; pace their activities and take frequent rests; manage sleep and pain first; then address co-morbidities and other health issues. As physicist Steven Hawking once remarked, “However bad life may seem, there is always something you can do, and succeed at. While there's life, there is hope.”
How do I know that I really have chronic fatigue syndrome?Answered by Lucinda Bateman, MD
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Q: How do I know that I really have chronic fatigue syndrome and that we’re not missing a deeper cause?
A: This is always an important question. When a new patient comes to my clinic we do our best to look for a “deeper cause” as well as conditions that may have overlapping symptoms, and treat them adequately. Then, when satisfied we have the done the most reasonable assessment possible at that point in time, we enter a management mode for 6-12 months in which we try to minimize disabling symptoms.
But it is always important to re-investigate new or changing symptoms, and I always appreciate input or a “fresh look” from another specialist periodically. Many illnesses evolve slowly [multiple sclerosis or myelodysplastic syndromes, for example] or only periodically exhibit symptoms, so they may not be evident upon initial workup. I like the combination of an attentive primary care provider and an ME/CFS specialist, both thinking diagnostically and comparing notes over time.
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