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. 

NOT ENOUGH INFORMATION

My nephew is a second-year medical student at Jefferson Medical College in Philadelphia, PA.  I asked him what he's learned about ME/CFS in school, and he said only one paragraph, and this is it:

CHRONIC FATIGUE SYNDROME typically includes widespread pain as well as the history suggestive of a preceding infection, tender lymph nodes, sore throat, and low-grade fever. Fibromyalgia and chronic fatigue syndrome share the symptoms of overwhelming fatigue and problems with memory and recall, but chronic fatigue syndrome is not characterized by the 11 or more tender points of fibromyalgia.

How can future physicians treat ME/CFS effectively if all they get is a paragraph of information--and not all of it correct at that?  Many patients with ME/CFS do indeed have the fibromyalgia tender points. 

In contrast, other diseases, including lupus, multiple sclerosis and Parkinson's disease each rate a full lecture at Jefferson and about 20 pages of notes.  And the school devotes several lectures to HIV/AIDS, including one class just on drug treatments.

Q & A with CAA's Dr. Suzanne Vernon

CFS Central:  At the NIH conference, you talked about the need for someone to lead the interdisciplinary research. Do you want the CAA [CFIDS Association of America] to do this?

Dr. Suzanne Vernon:  The Association is transforming to leverage and lead the kind of collaborative research that can be fostered by talent and technology from diverse disciplines. But the federal agencies, particularly the NIH and the Centers for Disease Control & Prevention, must engage more deeply in supporting this kind of research and directing their resources – human and financial – to the expanded study of nature of CFS at the molecular, cellular and clinical levels. It was clear to many of us who attended the State of the Knowledge Workshop that collaboration and leadership are required in equal measure to advance diagnostics, treatments and patient care. This is the Association’s core strategy to make CFS widely understood, diagnosable, curable and preventable.

CFS Central:  Is the NIH helping to fund the CAA’s biobank?  
 
Vernon:  No, the Association launched the SolveCFS BioBank with the help of gifts from individuals, all of whom are affected directly by CFS. We’re grateful for their support to build this important repository of clinical information and samples voluntarily provided by well-characterized CFS patients and healthy controls who share our commitment to advancing the understanding of CFS.

CFS Central:  In your view, what are some of the more important findings raised in the conference?
 
Vernon:  Having worked on CFS for 13 years, it feels to me like there is tremendous synergy around the need to be more collaborative across institutions, disciplines and settings (basic research, applied research and clinical research) to develop a shared set of tools that will accelerate the pace of discovery. The involvement of so many top people from the NIH at the meeting (especially under the circumstances of a near government shut-down) and Dr. Wanda Jones’ leadership at the Department of Health and Human Services make this a very hopeful and promising time.

CFS Central:  Why did you ask Dr. John Coffin what’s next for XMRV but didn’t ask Dr. Judy Mikovits?
 
Vernon: As I recall, we were already behind schedule and the moderators were moving on to the next topic in a very tightly packed agenda. It is also well established from Dr. Mikovits’ presentation at this meeting and in other recent presentations that the WPI will pursue its XMRV-focused studies and continue participating in the blood safety study and the multi-center study being coordinated by Ian Lipkin of Columbia University.

YOU'RE IT

A Patient Advocate for an Adult Daughter with ME/CFS Addresses Dr. John Coffin's Pain

By Lilly Meehan

Dear Dr. Coffin,

I was sitting near you at the NIH State of Knowledge Workshop when you said that the patients’ online comments about you were “painful.”  As the mother of a 25-year-old young woman who has been fully disabled with ME/CFS for ten years, and affected since childhood, I would like to tell you a little bit about “painful.” 

“Painful” is being six years old and realizing there is something wrong with you because you cannot keep up with the other kids in a game of tag and are always “it” because you can’t run fast enough.

“Painful” is being fifteen years old and having ME/CFS hit you so hard you cannot get out of bed, go to school or do anything besides sleep.

“Painful” is hearing your doctor say to your mother, “If she were my daughter, I’d get her to go to school.”

“Painful” is migraines and severe fibromyalgia nearly every day.

“Painful” is trying to keep up with your studies, missing school, getting farther and farther behind, and realizing there is no way to be in school at all, despite trying desperately to hang on to your life as a high-achieving high-school student.

“Painful” is finally being forced to drop out of school because you’re just too sick.

“Painful” is the day your classmates graduate from high school and you’re not there. 

“Painful” is being dismissed by doctors from Santa Barbara to San Diego who either don’t recognize a clear case of ME/CFS sitting right in front of them or don’t have any idea how to help.

“Painful” is when your friends go off to college and graduate and you do not go, nor are you well enough to even attend their graduations.

"Painful" is realizing the medical community doesn’t care much about your illness, and the government isn’t funding any research to help you.

“Painful” is when your friends get jobs and have lives and don’t seem to have much in common with you anymore, and then slowly drift away. 

“Painful” is the day your sister gets married and you can barely keep up with the festivities, and you know this day is not coming for you.

“Painful” is being an adult and having to depend on your mother to do your dishes, wash your clothes, do your grocery shopping, run your errands, bring you food and give you the only emotional support you get from anyone.

“Painful” is accepting Section 8 housing benefits and Supplemental Security Income benefits, which are $700 per year below the poverty level, when you’d prefer to be paying taxes and being a contributing member of society.

“Painful” is seeing little future ahead of you unless this illness gets more funding and a treatment and/or cure is found.

“Painful” is wondering what’s going to happen to you when your parents die and can no longer pay for your needs or be your caregivers.

This kind of daily pain is why the patients are upset, Dr. Coffin.  We know you’re an experienced scientist and have done many important things in your career. We don’t think you necessarily know the depth of suffering that is going on out here in the real world of ME/CFS.  It is hard to feel sorry for you when we deal with these harsh realities and struggle daily.

I think you need to see the reality of this dreadful situation and realize the pain you feel about online comments about you is less important than the profoundly disrupted life that most with this illness endure day in and day out, for many years. Perhaps you should put on your big boy pants and just cope.  It seems to me to be a much easier task for you than for us.

Lilly Meehan and her daughter live in Ventura, California.