Dr. David Bell, MD, a renowned specialist in pediatric ME/CFS, was one of the first doctors to recognize ME/CFS as a legitimate medical condition, and has spent more than 20 years dedicated to patient care and the ME/CFS cause. In recent years he has served on the Board of the International Association for Chronic Fatigue Syndrome/ME (IACFS/ME), and as chair of the Chronic Fatigue Syndrome Advisory Committee, which advises the Secretary of Health and Human Services. Though he still sees patients part time in the private practice (now a clinic) that he founded years ago in Lyndonville, New York, Dr. Bell's plans include a renewed focus on research.
In 1985, David Bell, MD, was an established pediatrician with his own successful practice in Lyndonville, New York, when his life unexpectedly took on new meaning. A mysterious illness ripped through his rural community affecting an unprecedented 216 people, 16 of whom were children. “It was fairly striking. At first it looked like mononucleosis, but we tested them for that and it was negative,” Dr. Bell recalls. “I assumed they were going to get better, but then they never did.”
“We studied (the kids), we referred them, we called the Centers for Disease Control, we sent them to all sorts of infectious disease specialists, and no satisfactory answer was ever forthcoming,” he says. Determined to find answers, Dr. Bell began his life-long work with this devastating illness, now known as ME/CFS, by doing his own extensive medical work-ups on the affected children.
What he found shocked the medical community. His diagnostic testing concluded that Epstein Barr Virus (EBV) was not the cause of the outbreak, and therefore debunked the widely held belief at the time that EBV is the cause of ME/CFS. “While EBV can still be a trigger, the illness has evolved into a post-infectious phenomenon,” explains Dr. Bell. He continues his “1985 Lyndonville Outbreak” study today, making it the longest running continuous ME/CFS follow-up study ever conducted.
Whether ME/CFS chose him or he chose ME/CFS is unclear. What is clear, however, is Dr. Bell’s dedication to ME/CFS patients and their difficult plight. “I can remember one moment where it sort of fell into place. In the initial outbreak there were several children who I sent to an infectious disease specialist, and the report came back that they were hysterical, that they were nuts…I knew these kids weren’t nuts,” he says. “That was the first time it ever hit me so clearly that there was a complete misunderstanding of this illness.”
According to Dr. Bell, this gross misunderstanding is largely due to the name (Chronic Fatigue Syndrome) itself. “I feel that (the name) disrespects patients and is one of the reasons that the illness is not taken seriously, and this is a very serious illness,” he says. “This is a major, major problem, and one of the worst things about it is the name.”
Ever since its inception in 1988, the name has wreaked havoc within the patient, medical, political and public communities. Issues such as disregard, disrespect, lack of credibility, inadequate medical treatment and ignorance run rampant. “This is the reason why so many adults refuse to acknowledge that they have Chronic Fatigue Syndrome. They don’t know whether they’re sick or they’re crazy, and they don’t want to talk to anybody about it because it’s such a threatening subject,” Dr. Bell says.
So why is the name itself so crucial to the ME/CFS movement? Dr. Bell believes it boils down to one thing: respect. “If the illness becomes recognized appropriately, (patients) will start getting the respect of their family and of their primary care physicians. They will start being treated with dignity which is a very important step,” he explains. “As soon as patients with this illness are treated with dignity, it will remove one huge burden from their shoulders.”
While most everyone can agree that the name needs to be changed, fierce debate persists when deciding on the most fitting name for this illness. Although he has suggestions of his own, Dr. Bell backs the use of the name ME/CFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome). “I think going to ME/CFS is a fairly good first step, but I still think that it needs to go even further than that,” he says.
Dr. Bell stresses the use of the acronym “ME/CFS” because it satisfies many different parties, while also providing an umbrella term that can be further differentiated down the line. Although he says both “Encephalopathy” and “Encephalomyelitis” are medically correct, he thinks a universal consensus is necessary for progress to be made. He supports the move to “Myalgic Encephalopathy-Chronic Fatigue Syndrome,” and is optimistic that others will get on board to effect positive change.
But the name, in Dr. Bell’s opinion, is not the only obstacle standing in the way of progress. He believes that the perception and clinical treatment of ME/CFS are also major roadblocks. In his new book, Cellular Hypoxia and Neuro-Immune Fatigue, Dr. Bell offers a new focus. “The area that I feel is becoming more important in the research, is that instead of (ME/CFS) being isolated to a single organ, it’s found in practically every cell of the body. This is a disease of cellular energetics, of cellular energy production,” explains Dr. Bell. “That toxic feeling you get is a cellular issue.”
His excitement is evident as he talks about this new strategy and its boundless possibilities. “If in fact this is correct, then it has very direct implications for treatment, which would be absolutely huge,” says Dr. Bell. “We are doing some things here in the office that I’m very excited about, but it’s much too early to say that they’re working.” It’s a massive undertaking, but one he feels is essential to making progress. “At first I thought, it’s too complicated, I’m too old for this. But now I’ve gotten very excited and I expect to spend the next 10 years of my life reading (about it).”
Although it is a journey he never could have planned to take, Dr. Bell is immensely grateful for his work with ME/CFS and remains unfailingly dedicated to the cause. His voyage has been ripe with surprises, struggles and rewards, and he wouldn’t have it any other way. “I’ve learned an incredible amount of medicine I never would have learned the same way,” he says. “If a person is interested in something, and they’re willing to just keep plugging away at it, then good things can happen.
“Whether or not that’s going to happen in this illness for myself or for any of the other people who have been doing it remains to be seen, but it’s an important lesson of life - everybody needs to take on a project that’s good for themselves, and good for the world, and then stick with it for the long-haul,” Dr. Bell explains.
In the end, amidst his mountains of research and stacks of writing, with hundreds of lectures and interviews under his belt, one thing matters more than anything else to Dr. Bell: his patients. “Perhaps my greatest contribution has been that I have stuck by (my patients) for a long time,” he says. “Even though I haven’t been able to remove all of their symptoms, I’ve never lost faith in those particular people. I’ve never given up on them, and that’s the only thing that I feel really proud of.”
Note: See also the "Q&A with FM/ME/CFS physician David S. Bell, MD - November 2, 2007"