Welcome to our Live Chat Event with Lucinda Bateman, MD.
Dr. ‘Cindy’ Bateman has seen more than 1,000 ME/CFS/FM patients since 1991 – in her private practice and as director of the Fatigue Consultation Clinic in Salt Lake City, Utah. She specializes in detailed work-ups, intended to provide extensive data, notes, and guidance for the patient’s primary care physician.
Dr. Bateman is also a tireless educator and patient advocate, in part as director of the Organization for Fatigue and Fibromyalgia Education and Research (OFFER), and as a board member of the CFIDS Association and IACFS/ME. Her pledge to patients: “I believe you, I will help you manage your symptoms, I will advocate for you.” (To read a personal profile, see also “Lucinda Bateman, MD – A dedicated ME/CFS and FM doctor bringing scientific data to the forefront.”)
Q: Doctor, how did you become interested in working with patients with chronic conditions?
Dr. Bateman: General Internal Medicine is a specialty well suited to the management of chronic conditions across a broad range of sub-specialties. I’m sure my training, which involved diagnosis and management of diabetes, arthritis and autoimmune disorders, cardiopulmonary diseases, gastrointestinal disorders, and geriatrics, helped me feel more confident about tackling ME/CFS and FM. In addition, training in the primary care field includes insight into the impact of chronic illness on one’s life and family.
I became specifically interested in CFS/FM because my older sister developed CFS as a young mother of three, just before I started my residency training. I wanted desperately to help her when it seemed like her doctors had given up.
Q: I know you are focused on educating primary care physicians about CFS and FM. Do you see any progress in medical school training? For example, is the University of Utah, where you did your internal medicine residency, doing anything to advance the understanding of CFS & FM among healthcare professionals?
Dr. Bateman: There certainly has been progress in the last few years. About 3 weeks ago I had a very nice experience speaking (along with Dr. Larry Baldwin, a general surgeon with CFS) to faculty and medical students at the University of North Dakota School of Medicine in Grand Forks. After a one hour “grand rounds” style talk to a receptive group of more than a hundred physicians, we were able to spend 2 hours with the second year medical students discussing this important public health issue. They were interested and very concerned.
This North Dakota visit was my small role in a much more extensive provider education project underway through collaboration of the CFIDS Association and the CDC. I’ll be speaking again in Denver, Colorado, in November.
Last May, the University of Utah departments of Internal Medicine and Family and Preventive Medicine sponsored two Grand Rounds talks on CFS which featured Dr. Bill Reeves from the CDC. That same week, the VA medical center and OFFER co-sponsored a 2 day CFS/FM conference for medical providers, with a slate of speakers from the IACFS/ME, Lynn Matallana from the NFA, and a special visit from Senator Orrin Hatch. We had 150 providers in attendance at the conference. Combined with the two grand rounds, there were more than 300 providers who came together to learn that week.
While ME/CFS and FM may not be as enthusiastically received in every academic institution, there has been some progress everywhere, with much more needed still.
Q: You say you have a constant waiting list of 100 to 300 patients, and most of us will have to rely on ‘open-minded’ primary care physicians, since there are so few specialists in many areas. Do you believe the number of CFS and FM specialists will increase, and what might it take for that to happen?
Dr. Bateman: It is not likely that the number of clinical “specialists” will increase right away because there is no such medical specialty and no training programs exist. These are multisystem conditions that do not fit easily into a known specialty (often based on one organ system), and may seem too complex or intimidating for primary care providers, which is one reason we have not made progress clinically. In truth, the presentation is quite consistent and diagnosis using our established case definitions is not difficult. The challenge for patients and providers alike is the severity and chronicity of illness, and that we still lack a clear understanding of cause(s), mechanisms and effective treatments.
My personal philosophy is that we should train primary providers who are familiar with other chronic illnesses to work as a team, such as family practice, general internists, pediatricians, psychiatrists (experienced with centrally acting medications), along with other specialists and ancillary providers. We need the help of everyone, but the coordination and management should still be centered around primary care providers. But we must assist them with additional information, which is why increased awareness and additional research are so critically important.
Q: Do you ever see patients who have had CFS (for many years) get better and live normal lives?
Dr. Bateman: I don’t see too many patients who have been sick for years get completely well, but I do see many adjust and adapt, with some improvement in the CFS, and go on to live happy and fulfilling lives.
Q: Do you find that younger doctors are more open to understanding what ME/CFS is all about?
Dr. Bateman: Yes, I always enjoy talking to doctors in training, or younger doctors who are not overwhelmed and tired yet! They are still interested in the science and optimistic about making a difference. I think we should spend more time with education programs directed at this group.
Q: Do you think the Awareness Campaign the CFIDS Association and CDC are sponsoring is making any real difference?
Dr. Bateman: Yes, I do think it has made a difference. I’m an enthusiastic supporter of all efforts to raise awareness, large or small, and have devoted much of my own time to tasks and projects that simply raise awareness. There seems to be a subtle shift in the public and professional communities toward increased interest and even a hint of compassion. It has certainly generated more conversation, and the conversations I hear seem more informed and less negative.
Q: My doctor doesn’t think CFS is real. You’ve written about the results of exercise tolerance studies. Is there a test or some literature on this subject that I could suggest to her?
Dr. Bateman: There are a growing number of research publications regarding the use of cardiopulmonary exercise testing for the evaluation of ME/CFS patients. There were a number of papers presented at the Ft. Lauderdale IACFS/ME scientific conference last January 2007. Abstracts or summaries are available on line.* Finding these names could lead to a search of other publications by the authors specifically, which came from several countries.
My experience with exercise testing was in collaboration with researchers at the University of the Pacific – Mark VanNess, Chris Snell, Staci Stevens, and others on their research team. I referenced a selection of papers in my article, “CFS and the Exercise Conundrum” which is available online as well.
Cardiopulmonary exercise studies are still in the research phase and so are available only on a limited basis for clinical use as a diagnostic tool or to guide exercise advice for ME/CFS. They are usually done by exercise physiologists or in the pulmonary departments of academic centers, rather than cardiologists who do treadmill tests to screen for heart disease. I hope we can soon take the information from research to a point where it can be used more widely in a clinical setting.
Q: About your “Exercise Conundrum” article on strength building for CFS & FM patients – do you take into account that some of us get worse with time? I had slow onset CFS, and the amount I could do became less and less.
Dr. Bateman: Certainly the nature and course of illness is different for everyone, but a point I wanted to make in the article is that deconditioning invariably plays a role in functional decline and rise in comorbid conditions over time.
The other point is that we must respect the illness of an individual, and tailor physical conditioning to the pathology that exists. If you can physically condition within limited guidelines, you should. If you try and can’t do anything without relapse, then you must obey the pathology, but physical deconditioning still remains an unfortunate insidious co-factor.
Q: Are there any new medicines on the horizon that point to a cure for CFS?
Dr. Bateman: None that I know of…unfortunately.
Q: Whatever happened to AmpligenR?
Dr. Bateman: Hemispherx is still preparing the NDA (new drug application) for submission of Ampligen to the FDA for approval. There have been tighter safety regulations and additional scrutiny at the FDA for all drugs of late, and this has possibly slowed the progress. But it is still in progress.
Q: Your clinic website says you’re taking part in Ampligen trials. Can you explain what it might do? If the FDA does approve it, would it be for all ME/CFS patients?
Dr. Bateman: I feel confident that Ampligen improves the symptoms and function of some patients after weeks to months of use, but I don’t feel we have solid data predicting or delineating the subset of patients most likely to benefit.
Patients enrolled in the Ampligen Phase II and Phase III clinical trials met criteria for CFS based on the older 1988 Case Definition, which emphasizes sudden onset and requires objective findings on physical exam consistent with sore throat, tender lymph nodes, low grade fevers, etc. It is possible this might select patients more likely to improve on Ampligen, but there hasn’t been a study directly comparing the two Case Definitions when used to decide about Ampligen either.
Most clinicians or researchers don’t routinely use the older definition any more, but rather the 1994 CFS Case Definition (Fukuda) or the “Canadian” definition. Once Ampligen is FDA approved, we will need to provide Ampligen to CFS patients matching the newer case definitions and observe carefully to understand who will benefit the most.
Q: Are there any other drugs or therapies you are currently studying for FM? Do you have any advice for how I could take part in a trial?
Dr. Bateman: We are currently participating in Phase II or Phase III clinical trials for FM drugs that are in development. We recruit and screen FM patients and follow those that qualify through the carefully outlined stages of the study protocol under the direction of our experienced staff.
The most appropriate patients for clinical trials are usually those with the most “typical” FM, the smallest list of medications and the fewest co-morbid medical and mental health conditions. You can imagine that it is difficult to evaluate a drug when there are a lot of confounding variables. Most FM studies require patients to be off other drugs that are used to treat mood, pain and sleep. Going off a stable drug regimen in anticipation of study participation should always be done under the close direction of a medical provider.
I think participation in clinical trials is a great way to make a difference. Every type of research improves our understanding of the illness spectrum in some way. We especially need more research regarding safe and effective treatments.
Q: I’ve been hearing a lot about LyricaR, the drug the FDA just approved for “Fibromyalgia symptoms.” Have you tried it with your patients, and what are your thoughts about it versus other pain meds? I’ve been using Tramadol for pain, but I would like to discuss this at my next doctor appointment.
Dr. Bateman: I do prescribe Lyrica for FM, and also enrolled a number of patients in the Phase III “14 week fixed dose” trial that led to FDA approval and an indication for FM. Lyrica is definitely helpful for many types of “neuropathic” pain, and has been approved not only for FM, but also for post-herpetic neuralgia (shingles pain) and the peripheral neuropathy associated with diabetes.
There are aspects of the drug that may also be helpful for anxiety and sleep, although it was not approved directly for this purpose. On the other hand, typical start-up side effects of Lyrica include dizziness and somnolence, so I start it carefully in low doses, usually only at night at first, then increase the dose as symptoms permit. Pain relief is better with at least twice a day dosing, so I try to add daytime doses.
Pain relief improves as the dose goes up, but side effects also increase. About 10% of patients gained a significant amount of weight, so this should be anticipated and followed closely. I advise all patients to adopt a low fat low sugar diet and try to be as physically active as their symptoms permit, especially if they are enjoying more pain relief.
Q: For strength building you advise that CFS patients find out what our “anaerobic” threshold is so we can avoid payback if we exceed it. What does this mean, and how is it determined? I have a heart rate monitor.
Dr. Bateman: Since cardiopulmonary testing is not readily available to most patients at this time, it’s difficult for an individual to know exactly where their anaerobic threshold is. In the exercise article, I’m speaking more generically about a “threshold” of activity, or the point at which, if the activity continues, the patient will experience uncomfortable illness “payback” symptoms.
This may or may not be the anaerobic threshold. I encourage patients to start very low with exercise efforts, work up slowly and cautiously as tolerated, and pay close attention to their response after exercise, thus developing more confidence that they can estimate or gauge how to stay under their own “threshold.” The threshold tends to vary with a number of factors, including the level of fitness and the waxing waning illness symptoms, and the unexpected emergence of other factors.
Q: What is the best type of massage for FM patients?
Dr. Bateman: The best type of massage is the massage best tolerated and enjoyed by the FM client! We did a massage study in my office with 20 FM patients. They had weekly massage for 12 weeks. Tender points, pain, sleep and mood symptoms gradually improved, but the massage had to be carefully adapted to the tolerance of each patient. Aggressive massage techniques can result in more pain, not less.
Q: I have FM, and my husband and I are thinking of starting a family. We haven’t been able to find much information about this subject. Do you see any female CFS and FM patients who are pregnant, and do you have any insights about things to consider?
Dr. Bateman: There isn’t much in the literature to guide us in this area. I encourage my patients to move on with their lives and pursue goals that are important to them, using good sense about what might be most compatible with their illness. Most of my young patients fall in love, marry, and eventually hope to have children. I counsel them regarding ways to be as healthy as possible, minimize use of medications, and prepare plenty of extra support.
Most do quite well throughout the pregnancy. The post-partum period and first year after a new baby are challenging even for women without CFS, so those with CFS/FM should plan for extra help from husbands, mothers, other family members, hired helpers, etc. I caution patients who are employed to take the most extended leave from work possible.
The same advice applies to the pregnancy and post partum period as it does to managing CFS in general: Work to achieve minimally interrupted restorative sleep, manage orthostatic intolerance, intervene quickly if mood deteriorates, pace the activity level, try to eat a good diet, manage weight, and stay as strong as possible within the symptom limitations.
Q: What proportion of your patients would you diagnose as having both CFS and FM? Do you have a theory about how they might be related?
Dr. Bateman: I don’t know for sure because I see the label itself as quite subjective and I don’t rely on it for more than a general approach to management, subject to constant revision! I suspect more than one-half of my patients meet criteria for both CFS and FM. The CFS case definitions and FM criteria were born and evolved separately in different areas of medicine, and although each has weaknesses, they are the still best tools we have to diagnose these illnesses, distinguish them from other conditions, validate them as “real” and devise management strategies.
On the other hand, they are broad, nonspecific, symptom-based, and overlapping in nature. They really do not help us determine etiology or design tests or treatments specific to the subgroups we suspect are present. The pathophysiology of both conditions seems to center in, or actively involve, the central nervous system, but actually involve multiple systems of the body.
By definition, we use the term FM when widespread pain is a major issue, and CFS when functionally limiting fatigue is predominant, and perhaps more often when the syndrome has sudden flu-like onset (not actually a requirement of the 1994 CFS case definition). A rheumatologist may be more likely to frame almost all cases as FM, while an infectious disease doctor may call most cases CFS. Even researchers and clinicians in the field don’t always apply the terms in the same fashion, because they are subjective and weren’t designed to be exclusive.
For now, we should remember that these terms are simply a research tool, based on a predominant symptom, designed to help us learn about what may be a family of related conditions with common features. I’d like to see more emphasis on research that evaluates patients across a broad spectrum of CFS/ME/FM, spanning the description of all definitions, with a goal to develop new markers that objectively identify subsets, either by diagnostic markers or by treatment response. For example, certain FM studies suggest that graded exercise, and particularly aerobic exercise, is helpful for improving symptoms and function, while there is a conflicting literature that suggests patients with CFS have impaired ability to exercise and may become more ill from attempting it, especially aerobic exercise.
Q: If people are getting more aware of ‘Chronic Fatigue Syndrome’ with the Awareness Campaign, do you think we should change the name?
Dr. Bateman: At this time I’m a supporter of using the transitional term CFS/ME (or ME/CFS) simply because much of the progress we have made in the published literature and recognition of CFS as an important public health problem has been made using the term Chronic Fatigue Syndrome and CFS. The term “Fibromyalgia” carries a lot of negative stigma too, but at least it sounds more descriptive. That said, I think scientists, clinicians and patients should all be feverishly engaged in research to understand the causes and pathophysiology of this whole family of related conditions, and use the information to work together toward a better final name or names.
Q: Do you treat patients with FM/CFS psychological symptoms such as depression, anxiety, or do you refer them to a psychiatrist and/or therapist? Is it likely a physician can or will treat both?
Dr. Bateman: I do treat depression and anxiety in my patients, but I often ask for help from therapists (psychologists, social workers, etc.) familiar with CFS/FM, and may consult with psychiatrists in difficult or unresponsive cases. The ability to do this depends on an individual physician’s experience and comfort with psychologic issues and psychiatric medications. I think it is important to integrate psychological support with the medical care as much as possible.
Q: Do you see many youngsters with CFS and FM? Is there an average age range when people come down with these?
Dr. Bateman: I’m a general internal medicine specialist, so I don’t typically see small children. I do see a fair number of adolescents. Their presentation is most commonly a post-viral fatigue syndrome, with marked orthostatic intolerance (usually POTS**) and sleep issues. While cases of CFS and FM do occur in young children, it is thought to be more common in adolescents.
Q: What are some of the most important blood tests that could determine if a person has CFS?
Dr. Bateman: There are no blood tests available clinically that can directly determine if a person has CFS. We do a lot of blood tests, but that is usually part of a process to rule out other disorders that may be contributing to the symptoms, such as thyroid disorders, anemia or other organ dysfunction. The diagnosis of CFS is made after carefully evaluating the symptoms, finding no other answers, and showing that the patient’s symptoms meet the CFS Case Definition. That may change in the future.
Q: Why, do you think, do more women than men seem to have CFS and FM?
Dr. Bateman: The differences in male and female physiology and genetics are likely to play a role, but I also think there are complex differences in communication styles, access to medical care, cultural norms and biases. The cause of illness probably matters as well, since the Dubbo [Australia] study found post-infectious fatigue followed in 11% of all four infections studied – and there was equal gender distribution or slight male predominance. And Fibromyalgia studies suggest that FM (as currently defined) may be 10 times more common in women.
Q: What are your thoughts on immunizations such as flu shots for Chronic Fatigue Syndrome patients?
Dr. Bateman: I don’t know of any studies that address this commonly asked question. I’ve thought about it for 15 years as I’ve followed patients. My observation is that most patients seem to do OK with immunizations, and should probably go ahead and be immunized if they fall in high risk groups, unless they have experienced an adverse reaction personally.
I include my patient in the decision making process on a case by case basis. Some very ill CFS/ME patients may be at lower risk for acquiring influenza because they are mostly at home and somewhat isolated. On the other hand, a severe case of influenza acquired from a family member carrying the illness could become a major setback. If we don’t immunize, I teach my patients to watch for early signs of acute disease and seek treatment interventions aggressively.
Q: I have CFS & FM. I came down with shingles recently, and I’m only in my 30’s. Do you have any thoughts on the pros & cons of shingles vaccine for CFS & FM patients?
Dr. Bateman: My thoughts about this are similar to my comments about flu shots, although with this newer shingles vaccine we haven’t had a long a period to observe for adverse effects in the CFS/ME and FM population.
Shingles is a miserable condition and surprisingly common in my patient population. At this point we discuss the pros and cons, and then I let my patients decide for themselves about the vaccine. I also teach them about shingles so they can recognize the symptoms early and receive prompt intervention to minimize the pain syndrome an outbreak of shingles can cause. It must be treated in the first 24 to 72 hours of the outbreak.
Q: Two women in my online FM support group have said their spouses had become ill with FM-like symptoms. Do you think it could ever be communicable?
Dr. Bateman: I never say “never” in this business, but at this point, I don’t think of FM as communicable. I do think it is common, underdiagnosed, has many causes and risk factors, including environmental factors, and that onset is “stress mediated.” Given these assumptions, I am not surprised to hear of situations where a spouse develops [or finally recognizes?] symptoms.
Q: I’m confused by talk about the different “case definitions” for ME/CFS. Which do you use with your patients, and would using one or the other make a difference in your diagnosis and treatment?
Dr. Bateman: Certainly, it can be confusing, to patients and professionals alike. The case definitions are useful tools for determining a differential diagnosis and for arriving at a name to use for a patient’s condition. Unfortunately, a single patient’s condition might be described by more than one case definition, especially if they have many severe symptoms (pain, fatigue, cognitive dysfunction, chemical sensitivities, etc).
I tend to choose the label, or combined labels, that I think best describe the individual’s condition, and sometimes I use a label that will be more acceptable or understandable in some way, to the disability courts, to a health insurance company, or to another physician. The labels don’t guide treatment, per se, but once I have carefully decided what to call a patient’s condition, it reminds me how I might approach treatment in that case and guides my decisions to a degree. In the long run, most treatment is adjusted based on each office visit with the patient in the context of their current symptoms and function, and doesn’t really rest on the label.
Q: I seem to find that some prescription drugs and some nutritional supplements will provide encouraging results in my symptoms for a while, and after a few months the benefits seem to diminish. Is this a common experience, and what might cause it?
Dr. Bateman: It is definitely common, if not the rule. As long as we are treating symptoms and not eliminating the primary cause(s) of this multisystem illness, the body’s complex mechanisms behind fatigue, pain, sleep, cognition, etc, will adapt to our treatments.
I try to think of almost all drugs and supplements as important but temporary tools used to manage severely disabling symptoms so the patients can feel well enough to enjoy their family, pursue personal goals, and implement healthy lifestyle changes (activity pacing and physical conditioning, sleep hygiene, stress reduction, emotional support, good diet…) that give their body the best chance to recover.
Q: Is there one symptom that you would say is most important to treat?
Dr. Bateman: There is seldom just one of singular importance, but I do put a high priority on sleep, and if orthostatic intolerance is severe, it is important to address as well.
Closing Chat Remark:
Our Live Chat Event with Dr. Lucinda Bateman is now closed. We thank Dr. Lucinda Bateman for her generous participation, and thank you all for contributing to this lively exchange. For more information about Dr. Bateman, read the personal profile at http://www.immunesupport.com/library/showarticle.cfm/id/8333
Dr. Bateman: Thank you for the chance to participate.
* See for example “A Report on the 8th IACFS Conference in Fort Lauderdale, Florida, 2007,” by Dr. Rosamund Vallings, MD, at Cort Johnson’s ME/CFS Phoenix site, or “A Retrospective on the 8th IACFS Conference” by Virginia Teague, at the IACFS/ME website.
** “POTS” stands for postural orthostatic tachycardia syndrome, which is a type of “orthostatic intolerance” or “orthostatic dysfunction” in which a change in body position to a more upright position – prone to standing – causes an abnormally large increase in heart rate. This is often but not always accompanied by a fall in blood pressure. It can make a person feel light-headed or even faint and may have many other symptoms. The tilt-table test for POTS requires the patient to lie on a table that can tilt the body to a more upright position, with electrocardiogram monitoring to determine whether the heart rate and blood pressure responses compensate normally for the change in position. Many people with CFS have been diagnosed also with POTS.
Orthostatic intolerance involves the “autonomic nervous system,” which is responsible for conveying sensory nerve impulses from the body to the brain to elicit mostly automatic or reflex, not conscious, bodily adjustments such as heart rate changes, or pupil dilation in the dark.
Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.