I think that my patients are some of the bravest, most stalwart individuals ever, and I admire them sincerely. Charles Lapp
Dr. Lapp’s path to medicine and then into chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) was an unusual one. Lapp graduated from the Rensselaer Polytechnic Institute with both Bachelor’s and Master’s degrees in engineering. After doing research, consulting, and marketing in Boston, Lapp turned to medicine and earned his M.D. from Albany Medical College, NY, in 1974. He then completed residencies in both internal (adult) medicine and pediatrics in the University of North Carolina at Chapel Hill.
For almost the next forty years, Lapp maintained a private practice in medicine and pediatrics in North Carolina. First introduced to ME/CFS in 1983, by 1987 he was actively collaborating with Dr. Paul Cheney, and from 1992 to 1995, acted as Medical Director of the Cheney Clinic. The Clinic was used as the base for launching what became the CFIDS Association of America (now The Solve ME/CFS Initiative (SMCI).
In August 1995, Lapp opened his own clinic in Charlotte – the Hunter-Hopkins Clinic – named after two patients who’d provided him with valuable learning experiences. After Allison Hunter’s convulsions were misdiagnosed as hysteria, the young Australian woman died during a grand mal seizure. After Linda Hopkins’s assertion – that she couldn’t breathe while sleeping – had been rejected by her doctors and by hospital staff, Lapp’s monitoring indicated that she suffered from “Ondine’s Curse” – a rare and particularly severe form of sleep apnea.
These patients’ experiences emphasized for Lapp the need to listen carefully to patient reports and diligently look into them.
With regards to ME/CFS/FM, Lapp did a three year stint on the federal advisory panel for ME/CFS (CFSAC), served as a board member for the American Association for CFS and the American Fibromyalgia Syndrome Association, and has been an advisor to both the CFIDS Association of America, the National Fibromyalgia Association, and ProHealth. He’s published numerous articles on ME/CFS/FM and has regularly attended and talked at most IACFS/ME Conference meetings.
Lapp is just one of five awardees of the Nelson Gantz award presented by the IACFS/ME (international professional society of ME/CFS) to physicians “who emulate Gantz’s clinical acumen, his passion for medicine, and his empathy for persons with ME/CFS and FM.”
Lapp has had a special relationship with Ampligen. His Hunter-Hopkins Center was one of only two sites to administer it in the U.S.. Prior to the FDA hearing on Ampligen, Lapp’s statistical analysis of his patients on Ampligen indicated that the drug was effective.
The Hunter-Hopkins Center was one of the few clinics, as well, to embrace the exercise testing techniques pioneered by Staci Stevens and Workwell, and to use them to establish heart rate and exercise guidelines and to assist in disability evaluations.
In the Lord interview, Dr. Lapp talked about some of the things that didn’t work out in ME/CFS/FM (heparin, oral Interferon, ambotrose/mannatech, oxytocin, treating oxidation radicals) and some that did (B12, dietary changes, CoQ10 and Krebs Cycle intermediates such as malate and magnesium, aquatherapy, and Ampligen). An active clinical center, the Hunter-Hopkins Clinic, under Dr. Lapp’s direction, has participated in 17 ME/CFS and fibromyalgia studies. It’s one of seven U.S. centers to participate in the CDC’s Multi-site trial.
After over thirty years of caring for chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) patients, Charles Lapp retired this year. Lapp is one of a small group of pioneering doctors who, in the face of great disagreement in 1980’s and early 1990’s, supported people with these diseases. That group includes Dr. Peterson (practicing), Dr. Cheney (retired), Dr. Lerner (deceased), Dr. Bell (retired), Anthony Komaroff (no longer practicing), Dr. Jay Goldstein (retired) and Susan Levine (practicing).
I asked Dr. Lapp for a chance to look back…
Do you remember how you first heard of ME/CFS?
Most people don’t realize that one of the first “epidemics” of ME/CFS occurred in Raleigh, NC when I was developing my medical practice there. The entire North Carolina Symphony fell ill with a flu-like illness in about 1983, and many members never recovered from it, including the conductor, Jack Parkhurst. This was later investigated by the famous epidemiologist, Seymour Grufferman from Duke University, because the outbreak was followed by a cluster of B-cell lymphoma cases. (He later concluded that this was unrelated.)
What really got me involved, however, was another outbreak following a Thanksgiving dinner thrown by a Fortune 500 Company in Raleigh, following which several executives and family members fell ill with mono-like illnesses that persisted. The executive VP commissioned me to explain why he could work one day and then had to rest for two days to recover. When he referred several friends and colleagues to me, I reported the epidemic to the CDC, and that is when they connected me to the work being done in Incline Village and Lyndonville.
- See a list of outbreaks here
I was seeing several “chronic fatigue” patients at that point and sharing histories and blood work with the CDC. I really got hooked, however, when my lab tech sent a blood sample by error to the HIV lab instead of the routine virology lab. The CDC called back and reported that they found “evidence of a retrovirus” in the sample, which seemed to trigger that “snipe hunt” for a retrovirus in the late 80’s and early 90’s for a retrovirus in Chronic Fatigue Syndrome!
What prompted you to build one of the very few ME/CFS/FM specialty clinics in the U.S.?
In order to consolidate efforts, Dave Bell and I would commute one week each month to Charlotte, where the Iverson Family had provided incentive to set up a Center of Excellence – the Cheney Clinic. (We had wanted to call it a generic name, but Cheney jumped on the opportunity to put his name on it!) In December 1991, I took a sabbatical from my family practice in Raleigh and moved to Charlotte. This turned out to be a permanent move! Dave Bell soon got tired of the commute and took a job in Boston. He later returned to Lyndonville. In 1996, Paul Cheney and I had a falling-out over ways to run the practice and I set up my own practice in Charlotte. As you know, he moved to Bald Head Island, then fell into ill health.
How many ME/CFS/FM patients do you estimate you’ve seen since 1987?
For the first 20-plus years I would consult on 5-6 patients per day, 5 days per week, 47 weeks per year. That’s 1,175-1,410 consultations per year for over 20 years. Then I cut back a bit to about 1,100 patients per year for the next 15 years, so I am estimating about 40,000 to 45,000 consultations in my career. I’m getting tired just thinking about it!
You were one of our pioneers – one of the few willing to take on these illnesses decades ago when there was almost no acceptance of them in the mainstream medical profession. Even now, thirty years later, they’re still not taken seriously at times. I’m sure many of your peers thought you were nuts to focus on these diseases. Can you gauge how the reception to ME/CFS and FM has changed over time among doctors. Have things improved much?
Early on I was ridiculed terribly and considered a charlatan or a “snake oil salesman”. Fortunately, I had known one of my first CFIDS patients when she was in good health and she fell ill suddenly after the Fortune 500 dinner, so I was confident that there clearly was some pathological disorder going on. I was also supported by her psychologist who reassured me that she was psychologically stable and intact.
In the past 20 years, as Fibromyalgia and Chronic Fatigue Syndrome have become better known, physicians are still reluctant to accept the diagnoses, but they have come to me with questions and asked for advice. Only in the last 5 years, however, have I been receiving numerous referrals from outside physicians.
If you were to give one (or two) pieces of advice to a new physician entering this field, what would it be? (Run??? :))
Spend time with one of the respected experts and learn as much as you can about the basics of this illness. It is very complex and at this time I think very hard to learn on one’s own. (We really need to develop a basic teaching curriculum for those who are interested in diagnosing and managing ME/CFS.)
If you were to give one (or two) pieces of advice to a new ME/CFS/FM patient, what would it be?
Get help as early as possible. Read as much as you can from reputable sources. Seek out a supportive primary doctor and then at least annually consult an ME/CFS specialist.
Anything you’d like to pass along on the treatment end that the average ME/CFS/FM patient might be unaware of?
The most important aspect of management is pacing (balancing rest with activity), followed by the management of sleep and pain. There is no cure, so medical management is purely palliative. While diet is helpful (avoid processed foods, minimize dairy and gluten), most supplements and herbals generally add little and may be harmful.
You began to specialize in this field in 1987. Did you think back then we would be further along than we are, treatment-wise?
It is very discouraging, yes, but then I look at the field of cancer and I thought that we’d have that licked by now, too. Cancer, too, is very complex. I think that cancer and ME/CFS have one thing in common: multiple triggers. Just as various cancers can be caused by smoking or sun exposure or aniline dyes, etc., I think that ME/CFS can be triggered by viruses, bacterial infection, inflammation, trauma, etc. Until we recognize this and separate the subsets, I think that prevention and treatment will be slow in coming.
If you could have been granted one wish that would have made your life as an ME/CFS expert easier, what would it have been?
To have Ampligen /rintatolimod approved by the FDA. I am convinced that this drug truly helps many persons with ME/CFS and should be made widely available.
Do any specific patients stand out?
MANY patients stand out. I think that my patients are some of the bravest, most stalwart individuals ever, and I admire them sincerely. I regret that I am not able to continue helping them, but hope that these 40 years of service have helped a large number of PWCs (persons with Chronic Fatigue Syndrome) to get a foothold on this dreaded illness.
How have the big three in fibromyalgia (Lyrica, Cymbalta, Savella) worked for you?
Absolutely. These are great tools for some – but not all – patients. Of course, they address mostly pain and mood.
You’ve been public about your worries that opioid pain killing drugs are going to be off-limits for FM and/or ME/CFS patients who might need them. Can you say anything about that and about possible alternatives?
Shame, shame on the critics who state that opioids should never be prescribed to persons with FM or ME/CFS. They should suffer this kind of pain for just a day or two! Based on little evidence, mostly in laboratory animals, they predict that opioids should not be useful in PWCs. However, survey after survey of patients with fibropain list opioids at the top of the list as most effective for pain relief. Why ignore the real life data?!
And why make people suffer based on theoretical data? I agree that opioids should be avoided whenever possible, but not excluded if needed.
How about low dose naltrexone (LDN)?
A wonder drug! I was the medical director at AFSA (American Fibromyalgia Syndrome Association) when Jarred Younger submitted his letter of intent to originally study LDN. I was delighted to approve the seed money to study this drug. LDN has now become the go-to treatment for mild-to-moderate fibropain in PWCs who are narcotic naïve. It also has immune effects, and some say it positively affects sleep and fatigue as well. Most specialty clinics are now using it widely.
It’s possible to spend a lot of money on supplements. By and large, how effective have supplements been?
In my experience, the most effective supplements have been methyl-B12, Vitamin D3, magnesium, possibly d-Ribose, NADH, DHEA, and glutathione in selected patients. Other than that, most supplements and herbals have not been terribly helpful, and sometimes even problematic.
You were one of the few doctors to incorporate exercise testing into your practice. How did you come to do that and how did you use it?
Exercise testing was started as part of the CDC evaluations very early on when we recognized that patients experienced post-exertional malaise. Back in the 1980’s, however, it didn’t have a name! We just knew that when patients pushed too much they paid a price and we wanted to know: (1) why; and (2) if we could predict how much they could push. That’s when we started working with Staci Stevens, Chris Snell, Mark VanNess, etc., to discover that the anaerobic threshold (AT) was key. Thereafter, we learned to keep PWCs within their AT to prevent flares and relapses.
Do you have any thoughts on where the breakthroughs in treatment are likely to come from?
Paul Cheney and I always thought the problem was systemic, probably metabolic and mitochondrial. You probably recall that we attributed the problem to a breakdown in or around the Krebs Cycle, which is why early on we prescribed Krebs Cycle intermediates like P5P, B6, NADH, ketoglutarate, succinate, malate, B12, folate, magnesium, CoQ10. These helped a little, but certainly were no cure. Unfortunately, we still do not have the tools to fully understand what is going on in the mitochondria. I thought that Mella and Fluge were on the right track when they suspected blocking antibodies at the level of phoshodehydrogenase, but apparently this has not worked out.
Have you had patients who have recovered, and if you have, can you make out any reasons why one person recovered while the others did not?
Since my retirement, many patients that I have not heard from have written to congratulate me and thank me for helping them to “recover.” To the person, they cite pacing and setting limits as the major thing that helped them most. I cannot emphasize that enough!
You’ve spent a substantial part of your career caring for ME/CFS and FM patients. The patients really appreciate that and it showed real courage. This has been a frustratingly slow moving field, though. ME/CFS, in particular, is known as a particularly difficult disease to treat. I’m sure that it’s been frustrating not to be able to offer patients “the” answer or even many times, I suppose, something that will really significantly help improve someone’s functionality. How has that been for you? Any regrets in taking ME/CFS/FM on – on having it be such a big part of your career?
No regrets! I have had such fun, and I have learned so much in treating PWCs. It has truly been a wonderful journey, and I hope to continue on the journey in some small way…
After seeing many patients over the years, if you were to guess, how many subsets do you think there are? A couple, over five, over ten? Or is everyone manifesting the same thing in different ways?
I keep a rough list and there are over twenty subsets on that list now.
You’ve participated in this field a lot. You’ve been at, and I believe have spoken at, all the conferences; you were on the federal advisory panel for ME/CFS; you’ve advised many groups including the SMCI, National Fibromyalgia Association and ProHealth and written many articles. What are you going to do now? Will we see you at the IACFS/ME conferences?
I hope to stay connected, yes. If they will have me, my dream would be to develop a web-based “beginner’s course” for the IACFS/ME so that any individual interested in learning about ME/CFS can easily get information and even accreditation. What do you think?
I think that’s a great idea 🙂
The Hunter-Hopkins Clinic After Dr. Lapp
Dr. Lapp is gone but the good news is that his shoes were quickly filled (as much as possible) by a local practitioner, Dr. Vincent Hillman (another doctor who also originally trained as an engineer). Dr. Hillman vows to “keep the practice almost exactly the way it was when Dr. Lapp was at the helm.” Dr. Hillman’s interest in ME/CFS derives from a family member who’s suffered from it for almost a decade.
- Learn more about the Hunter-Hopkins Clinic in Charlotte, North Carolina.