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.

IS ME/CFS CONTAGIOUS?

If you have ME/CFS and your significant other or child also has ME/CFS, please contact CFS Central: mindykitei.cfscentral@comcast.net

More on Dr. Judy Mikovits's New Role

The Whittemore Peterson Institute announced today that Dr. Judy Mikovits will transition from research director to director of translational research.  Dr. Vincent Lombardi, lead author of the Science paper that found the retrovirus XMRV in patients with ME/CFS, assumes the job of director of research.

"The point of the change is that the basic research grants and papers are not being funded or published because of the baseless contamination rumors," Mikovits wrote to CFS Central in an email.  "Therefore, I cannot mentor young investigators [and] students, who cannot move their careers forward because of these politics. I will be out seeking collaborations with other institutions--academic, private foundations and industry. Whenever we show and discuss all of the details of the data with investigators, they see and know it is not contamination.

"Prior to the reorganization," Mikovits continued, "I spent my days unable to help thousands... who have evidence of infection and cannot get help from their government or other research organizations.... I am totally confident that XMRV and a family of human gamma retroviruses is playing a role in ME/CFS.... [and] our reorganization reflects that confidence and allows me to move forward drug and diagnostic development."