WHAT'S GOING ON?

I received two dozen letters from patients with more than one family member diagnosed with ME/CFS.  Most were mother and daughter, a few were mother and son, father and daughter/son, and husband and wife.

The most compelling case for an infectious ME/CFS etiology may be the family of Keith Baker, better known as bakercape on the forums. 

Now 41, Baker was 16 when he suddenly became  ill. At the time, Baker was a high-school track star and Junior Olympic metal winner in Waterville, Maine. As he testified to the Chronic Fatigue Syndrome Advisory Committee, “I was running a race and suddenly I could not put one foot in front of the other. I stopped in the middle of my race and knew something was terribly wrong with me.”

Baker was diagnosed with mono the next day and came down with chicken pox a week later. Next, his 12-year-old brother got chicken pox and mother became ill with shingles (a reactivation of the chicken pox virus) and Bell's palsy. 

When his adult sister came to visit, she too got sick.  And when Baker and his brother visited their father—his parents were divorced—his father became ill as well.  In a matter of months, everyone in the family was sick with ME/CFS.

Today Baker still has ME/CFS, as do the rest of his family. Baker hasn’t been able to run since he first became ill.  His wife is healthy, but their two children have high-functioning autism, and the elder child also has seizures. Of all the family members, Baker’s brother is the most severely affected with ME/CFS.

Genetics can’t explain this entire family coming down with ME/CFS, because Keith Baker’s parents clearly don’t share the same genetics, and neither does Baker: He’s adopted. 

Interestingly, years after becoming ill, Baker met his birth family, and no one was ill with ME/CFS.

So what happened?  Was there a common infectious agent that made the Baker family sick?  That would explain the illness that afflicted Keith Baker and his brother and mother, and perhaps his sister as well.  But Keith Baker’s father doesn’t fit neatly into that scenario as he wasn’t living in the house.  The fact that the father got sick after his sons visited indicates the illness may be contagious as well.  

No one in the family has been tested for XMRV, but they plan on getting tested this summer. 

This family’s ME/CFS history is anecdotal yes, but anecdotes shouldn’t be dismissed, especially after nearly three decades of hearing similar stories.  Over the years, there have been compelling sagas of couples or family members becoming ill with a flu, and one goes on to develop ME/CFS, while the others recover.  Sometimes the lucky family members who recover come down with ME/CFS years later, however.

I’ve also heard of couples who come down with a flu and one develops ME/CFS, while the other develops another illness, including Parkinson’s, multiple sclerosis and diabetes.

Clearly, after three decades, it’s beyond time that the CDC and the NIH study these families and establish the cause.