The Institute of Medicine recently published a report about chronic fatigue syndrome that is very helpful for those of us who take care of patients with this illness.
So what is chronic fatigue syndrome anyway? Chronic fatigue syndrome (CFS) is also called myalgic encephalomyelitis (ME) and is a very poorly understood illness. Common symptoms of this syndrome are fatigue, body aches, “brain fog” (also called cognitive dysfunction), inability to tolerate exertion, and orthostatic hypotension.
Unfortunately, CFS is difficult to diagnose and mimics other illnesses. There are no specific tests to make the diagnosis, and unfortunately patients sometimes get labeled as fakers or malingerers. This is terrible because even though we don’t understand it, CFS definitely exists.
The new Institute of Medicine report helps to define the illness, which is one of the first steps towards understanding it better.
1. Profound fatigue which leads to a substantial decrease in function, lasting for at least 6 months, which is a significant change from pre-illness levels of function.
2. Inability to tolerate exertion. Exertion of any type brings on significant worsening of symptoms and function.
3. Sleep is not refreshing, which is not due to an identifiable sleep disorder. To clarify, someone can have both sleep apnea AND CFS, but correcting the sleep apnea doesn’t make the sleep more refreshing.
4. Problems with thinking (memory, attention, cognition) commonly termed “brain fog” which may be severe enough to make the patient unable to work or care for oneself safely.
5. Orthostatic hypotension which is a drop of blood pressure on going from sitting/lying down to standing up, or with prolonged standing.
Additional symptoms described with this syndrome include pain and immune dysfunction. Pain may take many forms, including headaches, joint pain and muscle pain. Fibromyalgia may also be present. Immune dysfunction (specifically NK-cell function) is well described as part of the syndrome too.
Now that we have a good definition for the illness, scientists are working hard to find the cause of it. I suspect we won’t find a single cause. It’s suspected that a viral infection may trigger the illness (Epstein-Barr virus is commonly suggested).
There is no specific treatment for chronic fatigue syndrome. Identifying and treating problems that make symptoms worse (like sleep disorders and orthostatic hypotension) is helpful. Removing chemicals and toxins from the home and especially from the diet is critically important. Healthy nutrition and smart supplementation to provide needed support and boost the immune system are fundamental to treating poorly-understood but severe problems like this.
If you read this post and thought “Hey! She’s talking about me!” I would encourage you to talk to your doctor about your symptoms. You might want to download the Institute of Medicine’s Clinician’s Guide and take it with you to your appointment. Not that you’re trying to tell the doctor how to do their job, but this is a poorly understood illness that is not taught in medical schools in general. Be aware you might ruffle the doctor’s feathers, like when my patients come in and say they found something interesting by Googling their symptoms. Sigh.
Until we know more about this illness, identifying it and managing symptoms are the best treatment plan. Now that the Institute of Medicine has defined the diagnostic criteria, researchers have a better chance of studying suffers and finding out what the underlying cause(s) could be and how to treat it.
QUESTION: Do you have any of the symptoms mentioned above?