XMRV Sheds New Light on Chronic Fatigue Syndrome

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 to 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 four 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 four 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 six 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 four of the following symptoms:
  • Weakness and exhaustion, lasting more than 24 hours, following mental or physical activity ("post exertional malaise")
  • Unrefreshing sleep, insomnia or excessive daytime sleepiness, despite sleeping for more than 9 hrs per night
  • 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
  • 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
  • Tender armpit and/or neck lymph nodes
  • Persistent or frequent sore throats
  
  
  
• In addition to the symptoms of the case definition, many patients develop other symptoms commonly associated with CFS including: 
  
  
  • neutrally 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

WHAT CFS IS NOT:

CFS is NOT "all in your head".  We have known for years that it clearly has a biological basis and the new findings associating it with the retrovirus XMRV (xenotropic murine leukemia-virus related virus) is just one more piece of evidence confirming that.  While we do not yet know whether XMRV is a causative factor for CFS, a "piggy-back" virus, or a virus that PWC react differently to than others, we do know that CFS is NOT "psychosomatic" or a over-reaction to stress.  We also know that CFS is NOT a manifestation of depression.  How can we tell the difference?  There are three principle distinguishing factors:

• People with depression classically lose interest/satisfaction in their social and previously enjoyed activities, while PWC desperately WANT to do social and "normal" activities of daily living, but 
• can't. . .or if they do, they pay the price for one or more days with a complete crash afterwards (post-exertional malaise).  If you asked a PWC what they would want to do if they became "well" tomorrow, they would generally have a long list of activities they longed to do.  Someone with classic depression would be more likely to respond to this questions saying "I don't know" or "I don't care."
• People with depression do not have persistent lymph nodes in their necks, persistent chronic sore throats, feel feverish, have night sweats or chills; PWC have these symptoms more often than not.  
• If you take a thorough history, most people with CFS were NOT depressed when they first became ill with CFS or for some significant time thereafter.  While many PWC later DEVELOP depression, it is clearly long after the onset of their illness.  This is called co-morbid or secondary depression, very similar to the co-morbid depression developed by post heart-attack patients.  As with those patients, patients with CFS do a little better when their depression is also treated, but just as the heart attack patient still has cardiac risk, they still have CFS. 

The recent data associating CFS and XMRV raises the critically important question about whether CFS is "contagious".  While many experts believe that CFS has an infectious etiology, we do know that it is not contagious in the typical sense.  While we know that there have been at least three reported community "outbreaks" in the past 25 years, most PWC are isolated cases in their communities.  While housemates and sexual partners of PWC may have a slightly increased risk of developing CFS, 80% of PWC have no known family history of CFS.  We also know that XMRV is not transmitted in an airborne fashion (as is the flu, for example), but XMRV has been identified in the white blood cells of patients with XMRV, raising questions about the safety of our blood supply and whether XMRV can be sexually transmitted or passed in breast milk or other bodily fluids.  This is clearly an issue the CDC needs to study imminently, especially in light of XMRV findings.  In the meantime, PWC should NOT donate blood, primarily due to concerns for their own health, but also to be sure not to pass this onto others. 

TOP TIPS FOR PWC:

1. Identify a physician as close to your home as possible who is knowledgeable about CFS and willing to take you and your condition seriously.  Get a proper diagnosis.  
2. Educate yourself first, then friends & family members & develop as close a support system as possible.  Because CFS patients are often homebound, they can easily become socially isolated.  
3. Put yourself on an "energy budget":  eliminate all non-essential physically draining activities and "save" your energy reserves for your most important activities.  
4. The healthier you are in general, the better you may manage your CFS.  While CFS is not caused or treated by vitamins or supplements, they may help compensate for nutritional deficiencies due to decreased appetite, decreased ability to shop or cook, or dietary imbalances.  For example, many patients have anecdotally reported benefits from omega-3 DHA for "brain fog" symptoms; probiotics for GI symptoms; melatonin for sleep problems
5. Avoid these things like the plague:  alcohol, nicotine, caffeine, perfumes/chemicals.  Avoid noisy environments.  
6. Treat all symptoms independently:  sleep medications if needed; allergy medications if needed; avoid known relapse triggers; treat headache/pain complexes; treat secondary depression with talk therapy and medication.
7. When you are well enough, practice MILD exercise.  This does NOT mean low-impact aerobics!  It means starting with 1 minute of slow walking and increasing by 15 seconds per day if possible.  Do not exercise during a "flare up" period other than mild stretching.  
8. Join an online support group or social networking site specifically for people with CFS.  No one else can fully understand what you are going through.  Same if you are a caregiver for someone with CFS.  
9. Write to your elected representatives about increasing research funding for CFS!

Created: 12/2/2009  -  Donnica Moore, M.D.