Immunologist Dr. Nancy Klimas is recognized worldwide for her extensive work with ME/CFS/FM and Gulf War Illness. In her efforts to expand our knowledge and understanding of these disorders, she wears many hats, including: Professor of Medicine-Psychology, Microbiology & Immunology at the University of Miami’s Miller School of Medicine and the Miami VA Medical Center; Director of the Miller School's EM Papper Laboratories of Clinical Immunology and the University of Miami/VA Gulf War Illness and ME/CFS Research Center; member of the federal CFS Advisory Committee (CFSAC); former President and current Board Member of the International Association of CFS/ME (IACFS/ME); a founding editor of the Journal of Chronic Fatigue Syndrome; author of more than 120 peer reviewed articles and three books; and a member of the ME/CFS Fair Name Campaign Advisory Board.
A combination of compassion, feminism and intellectual curiosity drew immunologist Nancy Klimas, MD, into the world of ME/CFS/FM research.
It all began in 1986 when a patient came to her clinic seeking answers. “She had been many, many, many places and had been told the most amazingly awful things by lots of doctors,” said Dr. Klimas. “She told me she thought there was something wrong with her immune system.”
With that, Dr. Klimas sent the patient’s blood work to fellow immunologist Dr. Mary Ann Fletcher’s lab with the instructions, “See if there’s anything wrong anywhere with this immune system.” After running an extensive battery of tests, Dr. Fletcher reported back, “I haven’t seen this before, but here is what I found.” What followed was a description of what is now known to be a rather classic profile of ME/CFS abnormalities.
“This Isn’t a Normal Immune System”
Dr. Klimas returned to the patient and said, “You know, I don’t know what you call this thing, but this isn’t a normal immune system. There’s something abnormal here.” Describing what happened next, Dr. Klimas said, “The patient burst into tears. She was so happy that someone had said there was something actually wrong. Even without a name or a diagnosis or a clear treatment approach, the patient was just grateful for having an objective measure after all these doctors had said such dreadful things to her.”
When that first patient began to share her experience with others she met who had similar symptoms, Dr. Klimas’ little clinic quickly grew to include about 30 ME/CFS patients - enough to allow her to publish her first paper. “That first paper made me some sort of instant expert,” she said, laughing.
Physician Education – A Priority
Those early patients made quite an impact on Dr. Klimas. “As a feminist I was very, very upset the way these doctors had demeaned these women and said the most patronizing things to them,” she said, adding, “I still find that to be true today. It’s really awful. Every week I hear stories that just are shameful.”
Expanding on the need for physicians who understand, Dr. Klimas said, “I have people calling me, writing me, pleading with me, finding ways to get through back doors to get to me. If I could clone myself out 10 times and do nothing but see patients, I would still have a wait list. It’s terrible because this illness really can be treated well by a reasonably well-trained internist, family practitioner, or primary care doctor. If you just break it into its pieces, you can at least help these people. And yet none of these patients can find a doctor that will give them more than five minutes of their time. It’s very frustrating.”
Dr. Klimas is doing more than just complaining - she’s taking steps to try to increase the education and training of primary care doctors to include everything they need to know about ME/CFS. Through her role as president of the IACFS/ME, she and the organization are looking for ways to make ME/CFS training part of the requirements for medical school accreditation.
It’s not an easy task. Even if the accrediting boards agree that ME/CFS should be taught, the first question becomes: Where does it fit in the curriculum? Does it belong in rheumatology? Does it belong in infectious diseases?
The second question is: What does it replace? Are they going to teach an hour less of lupus in rheumatology or an hour less of HIV in infectious diseases? It’s quite a dilemma.
Current Research Projects
ME/CFS is a complicated illness, involving interactions of the immune, autonomic and endocrine systems. In order to study all of its many facets, Dr. Klimas has put together an amazing research team that crosses a variety of disciplines. She said of her team, “I have some great scientists on the team - a lot of senior scientists who bring a lot of experience to the question.” The team is currently working on a number of projects:
n The “Good Day/Bad Day” study is a search for biomarkers that can be used to predict partial relapse or partial recovery. The researchers are drawing blood from patients when they are having relatively good days and relatively bad days, then comparing it to that of healthy subjects. Ever mindful of how difficult it can be for patients to even get out of bed on a bad day, they will send someone to the patient’s home to draw the blood on the bad days.
n A pilot study originally funded by the CFIDS Association was spun into an NIH grant to study the role of two specific biomarkers in the development of ME/CFS: neuropeptide Y (NPY) and dipeptidyl-peptidase (CD26). These peptides, formed from amino acids, regulate many physiological and disease processes in the cardio-respiratory, immune, nervous and endocrine systems.
n The Gulf War Illness Research Study is a big genomics study analyzing the role of gene expression patterns in the symptoms of Gulf War Illness compared to ME/CFS. Patients’ gene expression will be looked at before, during and after exercise. Since exercise causes people to relapse, they hope to find the mediator of relapse.
n An application has been submitted to develop training modules for physicians in South Florida that would serve as a model for national training programs. The goal is to empower primary care doctors to diagnose and treat ME/CFS patients.
In the clinical science world, Dr. Klimas has been trying to develop relationships with various pharmaceutical companies to do more clinical trials work on ME/CFS. She has already developed an informal clinical trials network with a number of different doctors both in the U.S. and internationally.
The Future of Research
When asked what she feels is the most interesting or exciting area of ME/CFS research, Dr. Klimas replied, “I would say the genomics data is the most exciting stuff out there because the genomics data is a refreshing way to start all over in looking at things. Instead of just testing a hypothesis…we can look at the entire human genome – at everything the genes know how to code for - and see what’s different between ME/CFS and healthy people…Then we can go back and see if it fits any of the other hypotheses - or did we learn something new?”
Dr. Klimas reported that the genomics data gathered from several recent studies confirm much of what they thought they already knew. “But that’s really good when you confirm something through a whole new window. That really nails it down.” Two pieces of the ME/CFS puzzle confirmed by genomics data are the immune piece and the HPA axis/cortisol piece. Genomics data are also identifying potential latent viruses that are at higher levels than normal or in the wrong patterns.
Describing the future uses of genomics data for ME/CFS, Dr. Klimas said:
n “It gives us the potential to subgroup people very accurately into physiologic subgroups that would be potentially responsive to treatments, which takes away this mess we’ve had of lumping everyone together and then being surprised when a therapeutic approach fails to pass clinical trials level standards.
n “It’s also going to give us diagnostic markers, and that’s so far along that one of the companies already has an office in Boston, setting up to try to move this through the FDA. It’s also going to give us biological markers we can use in clinical trials as surrogate markers of response. We’ve been hard up in research coming up with objective markers for response. It’s a really big hang up. It’s the reason why interventive research has gone so slowly.
“The best thing possible is this genomics data.”
Importance of Changing the Name – And Why Now
Dr. Klimas feels the name change effort is worthwhile because it will give the illness more respect from physicians and from the public. “I think 'chronic fatigue syndrome' has been a damaging name to the patients,“ she said. “It’s misleading. The illness is not really primarily about the symptom of fatigue. Fatigue is a word that can easily be dismissed. The severity of the illness is such that it cannot be dismissed.”
Addressing the timing of the name change effort, she said, “I think that using the ME in with the CFS actually should have been done years and years ago. It was a simple thing that was asked by many patient groups, and it should have happened.
“I think the reason it’s possible to happen now is that the attitude of people in the U.S. has shifted more to a global rather than a national kind of base. I think, truthfully, 15 years ago we were more parochial and now we are seeing the world without its borders. Having said that, you realize that most of the world uses ME rather extensively to describe the same illness. That and that alone is a good enough reason to put the ME/CFS together.”
In the end, Dr. Klimas thinks that ME/CFS will serve as an umbrella under which there will be subgroups that have more definitive pathogenically defined names. Best of all, she believes those subgroup classifications will help physicians direct their patients into the appropriate clinical trials, and ultimately successful therapy.
A Researcher’s Advice
When asked what is the most important advice she could give to an ME/CFS patient, she responded, “Number one is hope – just the word hope. The progress has been very significant in the past few years. We’ve really made big gains. Learning about ME/CFS with the new tools we have available really will bring effective therapy. Number two is pace yourself. It’s the single best thing anyone can learn to do.”
Pacing ourselves is something we can learn to do, but it is dedicated researchers like Dr. Klimas who give us reason to hope.
[Note: For more details on ME/CFS/FM science & treatment, read the excellent January 11, 2008 Live Chat Q&A with Dr. Klimas.]
* Karen Lee Richards is the Lead Expert, specializing in Fibromyalgia and ME/CFS, for HealthCentral's ChronicPainConnection (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.