What is Chronic Fatigue Syndrome and How is XMRV Related?

Chronic Fatigue Syndrome (CFS) has received relatively little consideration since it was first described in 1988, but the recent finding published in the prestigious journal Science showing an association between CFS and a retrovirus, XMRV has focused media and medical attention on this serious, devastating and debilitating neuroimmune condition. While there are some people with CFS (PWC) who are able to continue working and doing some of their activities of daily living, there are also many at the opposite end of the spectrum who are bed-ridden, completely disabled, and can’t even get to the bathroom without assistance. While CFS doesn’t kill many people, it does take away their lives and, in many cases, their livelihood.

CFS affects anywhere between 1 and 4 million Americans, but many more may “carry” XMRV. It affects people of any age, race, or socioeconomic group. It most commonly affects women 20--50; women are affected about 4 times more commonly than men. In teens and children, the average age of onset is 11.5. As teens, males and females are equally affected, but males tend to do a little better after puberty, whereas females tend to do worse.

While there are many middle-aged women who feel that they’re “tired all the time,” we have to distinguish between Chronic Fatigue SYNDROME and “chronic fatigue.” This confusion is because CFS was a poor name choice, akin to calling Parkinson’s disease “chronic shaking” or calling tuberculosis “chronic cough.” Other more appropriate names for CFS include the British choice myalgic encephalomyelitis (ME) and XAND (X Associated Neuroimmune Disease.)

How can you tell if you have CFS or have fatigue for some other reason? Go through the check list below, print it out and take it to your doctor if necessary.  It is most important to understand that the diagnosis of CFS is based upon having 4 or more of the following symptoms in addition to the first one (which is required for the diagnosis), and having no other medical problems to explain these symptoms.  Currently, there is no “test” for CFS; it is what we call a “diagnosis of exclusion” which means that all other possible causes of your symptoms have to be ruled out before the diagnosis of CFS can be made.

Dr. Donnica’s Decisionnaire for CFS

• I have had new, unexplained, persistent, or relapsing physical and mental fatigue for at least 6 months. This fatigue is not the result of ongoing exertion or another medical diagnosis; it is not relieved by appropriate rest.
• I have at least 4 of the following symptoms:

1. Weakness and exhaustion, lasting more than 24 hours, following mental or physical activity (“post exertional malaise”)
2. Unrefreshing sleep, insomnia or excessive daytime sleepiness, despite sleeping for more than 9 hrs per night
3. Substantial impairment of short-term memory or concentration, problems with my short-term memory, confusion, disorientation, “brain fog”; difficulty finding the right words or numbers
4. Widespread or migratory muscle pain; pain in the joints (without swelling or redness); headaches of a new type, pattern or severity that don’t respond to OTC medicines
5. Tender armpit and/or neck lymph nodes
6. Persistent or frequent sore throats

In addition to the symptoms of the case definition, many patients develop other symptoms commonly associated with CFS including: 

• Neurally mediated hypotension or orthostatic intolerance
• Multiple chemical sensitivities
• New allergies or food intolerances
• Painful gastrointestinal symptoms similar to irritable bowel syndrome
• New onset of asthma
• Hypersensitivity to light (photophobia) or noise
• Dizziness
• Palpitations
• Low body temperature or intolerance to heat or cold
• Often feeling “feverish” (without an elevated body temperature) or having chills
• Inappropriate sweating
• Abnormal appetite or decreased sense of thirst