Charles (Chuck) Lapp, MD, is one of the pioneer physicians who first brought CFS to national attention. In addition to his medical practice at the Hunter-Hopkins Center in Charlotte, North Carolina, Dr. Lapp is a Board Member of the American Fibromyalgia Syndrome Association; a recent Board Member of the International Association for CFS/ME and former member of the federal CFS Advisory Committee, which directly advises the Secretary of Health and Human Services. He is an advisor to ProHealth, Inc., and medical advisor to the CFIDS Association of America.
In the early 1980s, Charles Lapp, MD, was practicing medicine and pediatrics in Raleigh, North Carolina, when the entire local symphony suddenly came down with a flu-like illness. That was unusual enough, but then seven of the symphony members never recovered.
Soon there was another outbreak at a Fortune 500 company where several of the principals of the company developed a similar illness. When he saw the two outbreaks taking place in Raleigh, Dr. Lapp called the CDC and told them, “We have these people getting a flu-like illness and they’re not recovering.” The CDC asked him a few questions then said, “We’re seeing a similar thing in Lake Tahoe, Nevada, and out in Lyndonville, New York. Can we put you in touch with those folks and maybe we can make something out of this?”
“Those folks” were Dr. Paul Cheney from Lake Tahoe, and Dr. David Bell from Lyndonville. The three began talking among themselves. Soon they were exchanging blood samples with one another and sending blood samples to the CDC. Next, the CDC sent an investigator to Raleigh to speak to the patients there.
By this time Dr. Lapp was intrigued. He recalls, “The main thing was that no one else was treating these people. In those days if you had those kinds of symptoms – long standing fatigue, cognitive problems and muscle aches and pains – you were either a hypochondriac or you were nuts. Either way, you needed a psychiatrist, not a medical doctor. So I was the only doctor in town who was seeing these patients. I would see one patient and that patient would know two others and they would send me two more and before you knew it, I was a full-time CFS doctor.”
The Beginning of the First CFS “Dream Team”
One day in the mid-1980s when Dr. Lapp tried to call Dr. Cheney in Lake Tahoe, he was told, “Well, there’s good news and there’s bad news. The bad news is that Cheney doesn’t work here anymore. The good news is he moved next door to you.” Dr. Cheney had moved back to Charlotte, North Carolina, where he had gotten his medical training. At that point, the two doctors decided that two brains were better than one, so Dr. Lapp began commuting back and forth between Raleigh and Charlotte.
After a couple of years, Dr. Lapp said his wife, tired of the commuting, told him it was time to fish or cut bait. He chose to fish. Dr. Lapp recounted the story: “I spoke to Paul [Cheney] and I spoke to Marc Iverson, who was then the president and founder of the CFIDS Association. Marc came up with the great idea that what we ought to do is get the people together who had experience with this and set up a Center of Excellence here in Charlotte. So Paul left his practice, I left my practice, David [Bell] left his practice and we all moved to North Carolina to set up this practice together. That’s how the Cheney Clinic was formed. The truth is Marc Iverson set that up and guaranteed funding until we could get started. We didn’t need any guarantee, though, because there were a lot more patients than there were doctors. From the day we opened the doors, it was busy.”
His Practice Today
By 1996, Dr. Bell had left the practice and gone back to Harvard. Drs. Lapp and Cheney decided to take different approaches to treating patients, so they separated their practices and ended up practicing right across the street from each other.
Today, Dr. Lapp’s primary practice remains in Charlotte but he still sees patients in Raleigh two or three days a month. He says there are two reasons he keeps an office in Raleigh: 1) He has some old faithful patients there who are too ill to travel; and 2) It’s too far to travel from the Eastern Shore of North Carolina to Charlotte, so he essentially meets patients who come from the Eastern part of the state half way.
This care and concern that he shows for all of his patients is reflected in the mission statement of his clinic. “We are dedicated to exceeding our patients’ expectations by providing individualized, compassionate, empathetic, and timely care. Our goal is to improve the quality of our patients’ lives by providing the highest quality of advanced evidence-based diagnosis and treatment available.”
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Training New ME/CFS Doctors
One by one, the ME/CFS pioneers are retiring. Dr. Lapp is concerned that there don’t seem to be many young people coming up in the ranks to fill the void. He said, “I would love for the IACFS/ME, for example, to have seminars around the country to teach people how to diagnose and manage ME/CFS, much as Leonard Jason and I did for the CDC.” A few years ago, Drs. Lapp and Jason gave training sessions around the country for medical professionals. “They loved the course and it went very well, but it was expensive and time-consuming and the CDC decided not to continue it,” says Dr. Lapp. “I would like to see more courses like that.”
Currently healthcare professionals who want to learn more about ME/CFS can take an online course co-authored by Drs. Lapp and Lucinda Bateman in collaboration with the CFIDS Association of America – Chronic Fatigue Syndrome: From Diagnosis to Management – for which they can receive CME/CE credit through November 2009. The goal of the course is to assist healthcare professionals in detecting, diagnosing and managing this complicated disorder.
On the Research Front
Dr. Lapp has been involved in ME/CFS research for many years. “I’m a little different than the other ME/CFS doctors in that we test drugs for commercial companies,” says Dr. Lapp. “I think that’s very exciting because there’s a lot of commercial interest in three of the main symptoms of ME/CFS: sleep, pain, and fatigue. The only things they’re not addressing right now are the cognitive issues. We’ve tested a number of medications over the past several years that have come to market.”
For 20 years Dr. Lapp has been involved in the study of the drug AmpligenR. He’s excited that the company has finally accumulated enough data to submit it to the FDA. If Ampligen is approved, it will be the first drug ever approved for the treatment CFS. He says, “FDA approval lends legitimacy to the whole illness. Ampligen’s not a cure but it has certainly helped a large number of patients.”
The Long-Awaited Name Change
Talking about the proposed name change, Dr. Lapp says, “There is so much attributed to the word “fatigue.” Whenever you use that word, people immediately associate it with laziness. It’s not laziness or over-exertion. It’s a true lack of energy. It’s a true physiological problem that patients are having.”
Dr. Lapp has been a big proponent of the name change from the very beginning. He was part of the initial Name Change Workshop set up in the late 1990’s by the Department of Health & Human Services’ CFS Coordinating Committee. They worked for three years and ended up with a name nobody liked.
He says he’s always been a fan of using “ME” – meaning myalgic encephalopathy – first because ME is already in use and is widely accepted around the world; and secondly because he thinks myalgic encephalopathy tells a lot more about the disabling symptoms of this disease than CFS does.
When asked if he thinks this current name change effort has a reasonable chance of success, he replied, “I think that Rich Carson has done more for the name change than anybody else, to tell you the truth. By keeping it in front of the public eye, by keeping it in front of the patients on a regular basis, and because of the wide distribution of the ME/CFS and FM Newsletters that go out, I think he’s made tremendous inroads.
“We had virtually no impact whatsoever from the Name Change Workshop, and we had no response whatsoever from the government. Those of us who served on the committee and were still very concerned about changing the name realized that this is not going to come from the government; it’s not going to come from researchers; it has to come from the grassroots. I think as more of us use the term ME/CFS, it’s going to come into acceptance just as CFIDS did 10 years ago when that was introduced.
“It starts with organizations like the IACFS. We changed the name to IACFS/ME. And when professionals like myself and Lenny Jason and Tony Komaroff start using the term ME, then other people are going to start adopting it, too. They figure, if those guys are doing it, there must be something to it. All of our reports go out with ME on them now.”
* Karen Lee Richards is the Lead Expert specializing in Fibromyalgia and ME/CFS, for HealthCentral’s ChronicPainComnection (http://www.chronicpainconnection.com). Karen is co-founder of the National Fibromyalgia Association (NFA) and was Executive Editor of Fibromyalgia AWARE magazine for four years.