Press Briefing Transcripts
The Chronic Fatigue and Immune Dysfunction Syndrome Association of America and The Centers For Disease Control and Prevention Press Conference at The National Press Club to Launch a Chronic Fatigue Syndrome Awareness Campaign
NOVEMBER 3, 2006, 10 a.m. ET
DR. JULIE GERBERDING,
CENTERS FOR DISEASE CONTROL AND PREVENTION
PRESIDENT AND CEO,
CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME
ASSOCIATION OF AMERICA
ASSISTANT SECRETARY OF HEALTH AND HUMAN SERVICES
DR. ANTHONY KOMAROFF,
HARVARD MEDICAL SCHOOL
DR. NANCY KLIMAS,
PROFESSOR OF MEDICINE,
UNIVERSITY OF MIAMI
CHRONIC FATIGUE SYNDROME PATIENT
DR. WILLIAM REEVES,
CHIEF, CHRONIC VIRAL DISEASES BRANCH,
CENTERS FOR DISEASE CONTROL AND PREVENTION
MCCLEARY: My name is Kim McCleary. I am president and CEO of the CFIDS Association of America. And on behalf of the association and the Centers for Disease Control and Prevention I thank you all for joining us today.
This event is a real milestone in the life of every chronic fatigue patient and it marks what we hope will be a turning point in the public's recognition of the severity and complexity of CFS and in the ability for health care professionals to diagnose it and care for people with it.
We are very appreciative that Dr. Julie Gerberding, director for the Centers for Disease Control and Prevention, could be with us this morning. She has led the CDC since 2002, being named director just four years into her service with the nation's public health agency.
In this time, when emergency preparedness, food safety issues and bioterrorism seem to define public health priorities, Dr. Gerberding has continued to champion the need to be vigilant about diseases that occur across the lifespan and impact our collective health and quality of life.
I welcome Dr. Gerberding to the podium to frame chronic fatigue syndrome in this context and to introduce a series of communication objectives that will inform the public and health care professionals about CFS.
DR. GERBERDING: Good morning.
Thank you for that, and thank you for your leadership in all of this, Kim.
I'm Julie Gerberding, the director of the CDC. And I'm very honored to be part of this press event today.
Many times in the last few months, we have been in the media to talk about the urgent threats that face America: things like bird flu or food safety issues.
But we also have urgent realities, the kinds of problems that affect people's lives every single day that are already here and already among us. And one of those urgent realities is chronic fatigue syndrome
We at CDC recognize how important it is that we broker credible science-based health information for all problems of public health significance. And we certainly intend to do that for chronic fatigue syndrome.
But I also know, not only as the director of CDC, but as a physician who has seen patients with chronic fatigue syndrome in my own practice years ago in San Francisco, that this is an illness that is very difficult to diagnose and very difficult to understand and treat. But perhaps more importantly, from the clinician's perspective, it's often difficult for physicians to validate the disease and it's difficult to remember that heart of empathy that is so important to not only the understanding, but also the healing process.
So one of the things that CDC hopes to do through our communications strategy is to help patients know that they have illness that requires medical attention, but also to help clinicians be able to understand, diagnose and help people with the illness. But more importantly, to be able to validate and understand the incredible suffering that many people and their families experience in this context. So that's why we're here today.
This is a disease that has been shrouded in a lot of mystery and controversy. And sometimes people question if it's real or not real.
And based on the incredible e-mails that I have received thanking CDC for taking on this initiative in the past several days, I have heard stories from people across America, from hundreds and hundreds of people who are telling their stories -- their courage, their commitment to try to live the best possible life they can, but also the tremendous impact that this is having on their ability to function and to take care of their families and to work.
We at CDC believe in excellence. We are absolutely committed to excellence. We're committed to excellence in service to all people with public health problems, but we're also committed to excellence in science.
And I'm really pleased that Dr. Bill Reeves is here today to be able to describe to you some of the science that we've conducted.
We've been working on this from a scientific evidence-based perspective for more than two decades. And as we build the network of collaborations, I think we are beginning to open the shroud of mystery that has clouded this illness for a long time and we're beginning to develop clues and hypotheses that we hope some day will lead to better scientific understanding but also, most importantly, better prevention and treatment for chronic fatigue.
This is a complex disease. And in order for clinicians to be able to recognize and treat it, they need help. What I wanted to introduce you to today is to the CFS toolkit for health care professionals, which contains a number of very important information, including a very easy-to-store and -access handout, but also some more complicated material that really go through the various frames of chronic fatigue syndrome, describing how diagnosis should proceed, how treatment should be managed and, most importantly, how an empathetic physician relationship can really help people learn to cope and make the best possible quality of life for the duration.
So our campaign about “Get informed, Get diagnosed and Get help” is something that we're very proud to support, in conjunction with CFIDS and with the network of patients and advocates and scientists across our department, but also across the United States.
So it's my pleasure to present to you now just one of the public service announcements that form a component of this campaign.
(BEGIN VIDEOTAPE PRESENTATION)
PATIENT: The worst part isn't always waking up exhausted, with legs that feel like lead, or that my memory's shot and every muscle in my body is screaming. The worst part isn't even that everyone thinks the problem's in my head.
The worst part of chronic fatigue syndrome is missing my life.
NARRATOR: CFS affects more than 1 million Americans. Get informed. Get diagnosed. Get help.
(END VIDEOTAPE PRESENTATION)
DR. GERBERDING: I think you can see the message is very clear. We are committed to improving the awareness that this is a real illness and that people need real medical care and they deserve the best possible help that we can provide.
These television PSAs are accompanied by radio PSAs and by a Web site that is an incredibly useful resource. I think it's just been recently revised and it has everything that patients would need to know, everything that physicians need to know. And you can find it at www.cdc.gov/cfs.
Another real exciting part of this campaign can be observed in the back of the room, and that's the wonderful work of Mr. George Lange -- George, can you indicate your presence here? -- a photographer who has committed to telling the stories of the people who are exhibiting their courage and their stories in the context of CFS through their photographs that you can see around the room.
We hope you'll take some time to visit these exhibits, because that old saying that a picture is worth a thousand words and I think not only do these tell the stories of individual courage, but they also remind us of why we're here and why this is so very important, and why validating and legitimizing this illness is key to important improvements for everyone.
Two people who can specifically validate that here are Adrianne Ryan and Jackie Niederle -- are you here in the front row? There you are over here -- who are two patients with chronic fatigue syndrome who've joined us here today to lend their support and credibility to this information campaign.
So it is my pleasure now to introduce to you -- pardon?
OK. I was given instructions to introduce my leader, so I won't introduce my leader, but I will just thank him for sitting here next to me and for being my leader.
MCCLEARY: Sorry, I get to steal your thunder, Dr. Gerberding.
Thank you for your remarks, these important announcements and the CDC's commitment to making progress on CFS.
It is now my honor to introduce Dr. John Agwunobi, the assistant secretary for health. Admiral Agwunobi is relatively new to his post, having served as the secretary for health for Florida before joining the U.S. Department of Health and Human Services about one year ago.
As assistant secretary, he is Secretary Leavitt's primary health adviser and he oversees the U.S. Public Health Service and its commissioned corps.
He's a pediatrician by training and has also earned his MBA and a master's in public health.
Welcome, Dr. Agwunobi, who will share news from the department, and also from the National Institutes of Health.
DR. AGWUNOBI: Thank you, Kim.
Let me just start by saying it's a great honor to be here. It absolutely is.
Julie, I'm honored to get the privilege every day to serve alongside you. You are a significant and wonderful leader. Today, actually, I think reinforces the fact that this is a nation that can be very proud of the Centers for Disease Control and its leader, Julie Gerberding.
This is the first time we've ever had this kind of effort to make our nation aware of this horrible condition that affects so many, chronic fatigue syndrome.
If it weren't for Dr. Gerberding's leadership, I'm not sure we could stand here today and talk about this first national awareness campaign for chronic fatigue syndrome.
It focuses, I hope, all of us, on not just the very real need to make people aware of chronic fatigue syndrome, but on the fact that we need to redouble our efforts to learn more about this condition and about research.
Chronic fatigue syndrome is a condition that requires coordinated efforts of everyone. It's not just about the CDC. Everyone across our nation needs to be aware of what this condition is and what it means.
Across the Department of Health and Human Services, every agency has engaged, or needs to engage, in finding ways to address the many questions that remain.
Secretary Leavitt, my boss, Michael Leavitt of the U.S. Department of Health and Human Services, has just renewed the charter for the department's Chronic Fatigue Syndrome Advisory Committee.
Now, this is a committee that's composed of individual citizens from across the nation, each with different perspectives and points of view and areas of expertise.
The 11 members from the public, appointed by the secretary, represent academic science, community medicine, law, disability services, patient advocacy. And they meet periodically throughout the year and offer advice to the secretary and to each of the agencies in the U.S. Department of Health and Human Services that work to better the lot and the situation of those suffering with chronic fatigue syndrome.
The Centers for Disease Control, the National Institutes of Health, the Food and Drug Administration, Health, Resources and Service Administration and the Social Security Administration all benefit from these recommendations that are made by that advisory committee.
As we move forward, it's clear that research is going to have to be a focus of our efforts. We need to also increase awareness, as Julie Gerberding of the CDC has just pointed out, amongst all members of our society.
CFS research has advanced since mid-1918 -- mid-1980s, rather, but there's so much more that we need to do.
We've continued to search for the cause of CFS and have sought to better understand its scope, its impact, its pathogenesis and its long-term consequences.
At the National Institutes of Health, our research efforts have been led by one of the nation's finest leaders, Dr. Vivian Pinn, who is here from the National Institutes of Health to join us and to show the support that the National Institutes of Health, under Elias Zerhouni, has given to this effort.
She and her staff have formed a trans-NIH working group working for CFS research, an effort to have all of the different institutes in the National Institutes of Health contribute to the research that is ongoing and needs to continue.
There are 13 of those National Institutes of Health institutes and centers currently participating in the NIH efforts to push for knowledge in the field of CFS.
I'm honored today to announce seven new research grants: efforts to better understand how the brain functions and its relationship to CFS. They represent $4 million in new support for CFS research. I'm going to run through them very briefly, if I may.
The University of Miami, Dr. Michael Antoni, with cognitive behavior stress management and chronic fatigue syndrome, will benefit from one of these grants.
Georgetown University, Dr. James Baraniuk will work on proteonomics of cerebral spinal fluid in chronic fatigue syndrome.
At Vanderbilt University, Dr. Italo Biaggioni will work on autonomic nervous system in the chronic fatigue syndrome.
At the University of Miami, Dr. Mary Ann Fletcher will do a study on CD26 in chronic fatigue syndrome -- it's a chemical with a long chemical name.
At the University of Utah, Dr. Katherine Light will work on stress and neuro-immune disregulation in chronic fatigue patients.
At Sun Health Research Institute, Dr. Dianne Lorton will work on human spinal cord glial cytokines and chronic pain.
And at Tufts University, Dr. Theoharis Theoharides will work on mast cell antidepressants and chronic fatigue syndrome.
Now, this is just a beginning. There's so much more research that needs to occur. We're pleased to announce this work, but we also commit to doing more as time goes on. Our understanding of CFS and our response to it is likely to evolve over time.
I'm going to end by saying I think it's important that we always put this in perspective. This is about real human beings, our friends and our families, our parents and our children, our neighbors and our friends. They are suffering today, across this nation.
And as much as we do our work to push toward alleviating that suffering, today I stand and I look out into America, asking everyone to learn as much as you can about CFS. Learn what you can do to help in the fight against CFS, and become a partner with the CFS community and with those suffering from CFS as they strive to fight this.
MCCLEARY: Thank you, Dr. Agwunobi. We really appreciate you being here to underscore the department's multifaceted approach to expanding research and strengthening education efforts and to the passionate words you just concluded with this morning.
We'll now move from the aerial view to the one from the trenches.
As chief of the Chronic Viral Diseases Branch at CDC, Dr. William Reeves has led the CFS research program since 1992.
In that time, he has greatly expanded its scope, and over the past six years he and his collaborators have contributed more than 80 research articles to the peer-reviewed literature.
Last month -- actually this month -- this week -- Thomson Scientific identified a 2003 paper by Dr. Reeves and colleagues on clarifications to the CFS case definition as an essential science indicator; one of the most cited papers in the recent medical literature.
Dr. Reeves will provide us with an update on the CDC's research program and the latest findings on a particular subset of CFS patients whose illness begins with a documented infection.
DR. REEVES: Dr. Suzanne Vernon, who leads our molecular epidemiology program, and I are very excited to be with you this morning to provide an update on the CDC CFS Research Group's current activities and some recent publications.
The CDC CFS Research Group is responsible for approximately 80 peer-reviewed publications since 2000. Much of the work comes from a large-scale study that we conducted between 1992 and 2004 in Wichita, Kansas.
And I want to share some of what we learned from that study -- or actually this set of studies -- because this knowledge underscores the need for the awareness campaign and provides a foundation for understanding our and other people's current research.
First of all, we selected Wichita because its population, in terms of race, ethnicity, socio-economic status and education, mirrors the U.S. as a whole. Also, there is little migration in or out of Wichita, so we could survey a fairly stable community over a period of years, rather than just one point in time. And we were able to survey a population, not just people who are able to consult physicians.
The first objective in Wichita was to estimate the prevalence of CFS, the burden that it imposes on the population. To do this, we surveyed a quarter of the population of Wichita, and we collected information on 90,000 residents selected randomly. We then conducted more extensive clinical assessments of about 7,000 of those residents.
From that study, we've documented the prevalence of CFS, the occurrence in the population; that the illness affects at least a million Americans.
Women are affected at about four times the rate as men, and non-white women are affected at a rate greater than that of white women. The age group most affected is between 40 and 59 years of age. So it is primarily an illness of women in the 40-to-59 age group.
It does, however, affect both sexes. It also affects adolescents. It's uncommon in adolescents, but when it affects an adolescent it has a tremendous impact on that person and his or her family.
I should mention that we have recently completed the first phase of a similar but larger -- and, learning from our previous experience -- population survey of chronic fatigue syndrome in metropolitan, urban and rural populations of Georgia. We're in the process of finalizing manuscripts for peer review publication of the findings there.
Back to Wichita.
When we completed the medical workups of people in Wichita to confirm that they had CFS, we found that only half of those with the illness had consulted a physician for the illness. We found that only 16 percent had been diagnosed and treated for CFS.
This draws attention to the importance of the campaign so that people understand they need to consult a health care professional, and health care professionals understand the importance of working up and evaluating the disease. It also meshes with other campaigns that the CDC supports to educate health care providers on the evaluation, diagnosis and treatment of CFS.
In Wichita, we also looked at the impact of CFS on the individuals and families that have it. We found that a quarter of the people with CFS are either unemployed or receiving disability. We looked at the economics of this. We found that the average affected family foregoes $20,000 annually in income and wages. That's half the median U.S. household income. If you extrapolate this to the U.S. economy, CFS is responsible for an impact of about $9.1 billion annually in lost earnings and wages.
We're making a more refined estimate of the economic impact of CFS in Georgia. And we're going to include this to reflect disability payments, direct costs associated with receiving care. The analysis of disability associated with CFS can be quantified not only in economic and disability terms, but in comparison to other conditions.
We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.
We followed the CFS patients in Wichita over a three-year period, so we were able to follow the population with the illness over time.
We found that CFS follows a pattern of remitting and relapsing symptoms, the symptoms can change over time, and that spontaneous recovery is rare. We also found that patients who get appropriate care early in their illness have a significantly better long-term health outcome than those who do not. Again, this underscores the importance of this campaign.
From our population study, we had identified people from the population. We were able to conduct a series of extensive in-hospital studies similar to those the NIH do.
We brought 227 CFS patients and non-fatigue controls into a hospital ward that we established in Wichita for a two-day study.
During that study, we conducted detailed clinical evaluations, we measured sleep physiology, we did formal measures of memory and concentration, cognitive function. We measured autonomic nervous system function. And we did extensive blood evaluations.
These included assessment of hormones, cytokines -- which are part of the immune response -- the person's genetics and activity levels of the 20,000 genes: how the gene -- what genome was working.
We have published several manuscripts describing the results of these individual assessments. Other manuscripts are in review, and we're working on still others.
Dr. Vernon, who I mentioned heads our molecular epidemiology program, organized what I believe is a unique effort out of the clinical study. We had a massive data set. We had more than 2 million observations on each patient.
That particular effort that she did resulted in publication of 14 papers in a special edition of the journal Pharmacogenomics earlier this year.
She brought together four teams comprised of CDC scientists and other international experts in medicine, molecular biology, epidemiology, genomics, mathematics, engineering and physics. This is pretty unique to public health research.
We gave them the data as the four teams. And we gave them basically carte blanche to work as teams to use any computational or theoretical approach to try to tease out markers and the pathophysiology of the illness.
Six months later, we brought the groups together for three rather intense days in which we reviewed each group's approach. We rather vigorously challenged their assumptions and analyses. We then worked with them to refine it. And we resulted in the publication I just showed you.
Among the most exciting of the findings is that people with CFS have certain genes that are related to those parts of brain activity that mediate the stress response. They also have different gene activity levels. This gets beyond the genes; it's which genes are actually active.
And these activities are related to the body's ability to adapt to significant changes and stressors that occur throughout life, such as infections, injury, trauma and other adverse events.
I want to make clear that I'm not talking about minor events like public speaking.
I'm talking about major life stressors that impact the brain and various bodily systems.
The analyses show that there are at least four distinct profiles or groups of people that make the illness of CFS, and this implicates probably different sets of subtle alterations in the HPA axis and sympathetic nervous system.
We have generally accepted that CFS is a heterogeneous disorder, but having biologically significant measures to group patients would be a tremendous help in diagnosis in treatment as the research progresses.
We're moving toward a concept of a molecular profile that will help to determine which patients will respond best to certain treatments and to help implement prevention strategies.
We're a long ways from having the answers, but I think we have a very good start.
I think this is also an exciting application of public health genomics. This is a major effort at CDC to put genomics in the context of public health. And I believe the approach that we've done will not only have ramifications for CFS, but it has ramifications for other illnesses as well.
I want to close just to mention a publication that Ms. McCleary brought up. This was a collaboration that we worked on with a group of researchers in Australia, led by Dr. Andrew Lloyd at the University of New South Wales and we have just published in the September 16th issue of the British Medical Journal showing that following acute disease with three quite different infectious agents about 12 percent of the patients don't get better. They develop chronic fatigue syndrome
In this particular study, Dr. Lloyd and our other colleagues followed 253 patients for a year following acute disease due to Epstein-Barr virus, which causes mononucleosis; Coxiella burnetii, which causes Q fever -- as an aside, this is a bioterrorism agent; or Ross River virus, three quite different agents. The agents in general, people get better afterwards.
In addition to documenting, however, that 12 percent of them had developed CFS at the six-month period and continued with this, we found that the best predictor for CFS was intensity of the initial infectious disease. The sicker the patient when he or she first got infected, the more likely they were to have persisting chronic symptoms. There were no other factors that we found in this study, psychological or biological, that held up under thorough analysis.
We have genomic data from this group of patients, and so we are in the process of looking at their gene expression profiles to tease this apart in more detail.
I think I've probably talked long enough. Dr. Vernon and I will take questions during the Q&A session. And we will be available afterwards for more extensive discussions that any of you may want to do.
I would just end that, as Dr. Gerberding said, CDC is really quite serious about this research. We have a rather large multidisciplinary research group that collaborates internationally. And the group is very committed to finding meaningful answers that will ultimately help CFS patients.
MCCLEARY: Thank you, Dr. Reeves, for your presentation this morning, and for the contributions that you, Dr. Vernon and your colleagues have made to the field of CFS research.
We move now from our federal agency representatives to those who tackle the complexities of CFS from academia, within the medical health care system, and in their private lives.
First, it is my privilege to introduce Dr. Anthony Komaroff of the Harvard Medical School.
Dr. Komaroff became interested in CFS in the early 1980s and remained engaged as a physician, a researcher and now as publisher for Harvard Medical Publications.
He is widely acknowledged within the CFS world as the most distinguished ambassador we have to the broader medical community and research community. Dr. Komaroff will share with us his perspective on what we know about chronic fatigue syndrome after more than 20 years of study.
DR. KOMAROFF: Thank you, Ms. McCleary.
It's a pleasure to be here today with several people who really have dedicated successfully a big part of their lives to trying to understand and help get recognition for this terrible illness.
Let me tell you what brought me here.
About 20 years ago in my practice, a young health professional came to see me with an unusual story. She said she had been perfectly healthy all her life and about nine months before she had come down with what had seemed like just a regular flu, cold, virus -- sore throat, headaches, fevers, swollen glands -- but there was a difference. And the difference was that, unlike all those previous, quote, "viral illnesses," she never felt better after this. It was now nine months later. She was hobbled. She was regularly bedridden, unable to work. And wanted to know what to do.
To make a long story short, at about the same time, I discovered that groups in Atlanta, Nevada and other places around the world were seeing very similar patients. And efforts coalesced and the illness was given a name, chronic fatigue syndrome. But at that time, we didn't know much about it.
And we still don't know. The bad news is we still don't know what causes it or how to treat it successfully.
But the good news is that there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness. In my view, that debate, which was waged for 20 years, should now be over.
You've heard today about the CDC's research findings and this special issue in April of Pharmacogenomics. I'd like to briefly highlight some research findings that preceded and that fit with what the CDC's research found.
First, abnormalities of the brain. It's hard to study the brain in the living human being. Invasive techniques like a brain biopsy are reserved only for people with life- threatening illnesses. But over the last 20 years, the number of non-invasive techniques to look at the brain has grown enormously and here's what we're learning.
First, brain hormones. The brain has hormones produced in two major centers: the hypothalamus, pituitary gland. And a whole bunch of studies show that that hormone system is different in patients with chronic fatigue syndrome than in healthy people, people with depression and other illnesses.
Brain imaging studies, particularly MRI, or magnetic resonance imaging, scans and nuclear scans of various types, have shown inflammation, reduced blood flow and impaired cellular function in different locations of the brain. In many patients, cognitive function is impaired. And finally, the autonomic nervous system, which controls blood pressure and pulse and other things, most studies find to be abnormal in this illness.
Now, none of these nervous system abnormalities is constant or permanent. But when they're there, they change a person's life. And it's entirely plausible that the abnormalities that have been seen on these various neurologic testing techniques could explain the symptoms of this illness.
What about the immune system in chronic fatigue syndrome?
Many studies have found that by several criteria the immune system appears to be in a state of chronic activation, as if it were trying to fight against something foreign.
The research described by Dr. Reeves on looking at gene expression studies, for example -- and this is now true in several different laboratories around the world, looking at different patients -- the genes that control the activation of the immune system are abnormally expressed in patients with this illness.
Dr. Klimas and other investigators have shown that different cells within the immune system are abnormal either in number or their capacity to function.
Finally, what about energy metabolism?
For a long time, there has been a theory that the lack of energy in the human being in chronic fatigue syndrome was caused by problems with energy metabolism inside the trillions of cells inside the human being. And I was very skeptical of this. It seemed, sort of, too clean and too good to be true. But I think in the last five years a number of studies have shown that there probably are abnormalities of energy metabolism in patients with this illness.
So looking back over the last 20 years, I think there's been undeniable progress in understanding what this illness is. But all of us -- doctors, patients and their families -- remain terribly frustrated by it, because we don't have fundamental answers yet.
But we're less frustrated than we used to be. Today we have powerful new research technologies and tools we didn't have even 20 years ago, and they are being put to good use by laboratories all over the world.
Why have we made progress such as we have? I think, first and foremost, it's because public and private investment in research has allowed that progress.
Now, it won't surprise you to learn that I think there should be even more public and private funding for research on this illness. But there has been a lot. And in particular the CDC's research over the last eight to 10 years I believe has taken the whole field to a new level. We're not there. We're still not there. But in contrast to 20 years ago, we have a lot more dedicated clinicians and researchers around the world who are trying to understand and fix this illness.
I'd like to introduce now -- I would like to reintroduce now...
Ms. Kim McCleary, who will introduce -- who obviously takes her prerogative of introducing each of us quite seriously.
MCCLEARY: I have little things I have to say.
Thank you, Dr. Komaroff.
Dr. Nancy Klimas is a professor of medicine at the University of Miami and a researcher and clinician at the Miami Veterans Administration Hospital; has been involved in the care of CFS patients nearly as long as Dr. Komaroff. The multidisciplinary group at Miami was among the first to recognize and report immune system abnormalities in CFS patients.
Dr. Klimas is president of the International Association for Chronic Fatigue Syndrome, an organization of medical professionals and research scientists -- will have its next biannual research conference in January in Fort Lauderdale.
Dr. Klimas is recognized as one of the most patient and passionate patient advocates around. And I have to say that I've learned and benefited from our collaboration since we first met almost 16 years ago.
Wearing her doctor hat, Dr. Klimas will offer insights into the challenges of caring for CFS patients that can be met with stronger education efforts.
DR. KLIMAS: Good morning. I've been waiting for this day for a long time.
Over the past 20 years, I've treated more than 2,000 chronic fatigue syndrome patients. I've seen patients that were angry and defiant, frustrated, trying to convince their physicians, their families, their friends that this is a real illness. I've seen other patients that hid their diagnosis because of the stigma attached, and suffered in silence.
While attitudes have improved in recent years, the launch of this national awareness campaign is so important to increasing understanding of this illness.
Historically, it's been the lack of credibility in this illness that has been one of our major stumbling blocks to making progress.
Well, today there is evidence of the biological underpinnings, as Dr. Komaroff described. And there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis.
And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers.
While there continues to be these advances and understanding the illness, I'm less enthusiastic about the advances in the clinical care of patients. Chronic fatigue syndrome is still very challenging to treat. It creates a cycle of frustration for patients and for their physician.
We need much more work to understand the biological underpinnings of the illness and have it translate into clinical treatments that are effective.
We need clinical trials, data, with patient groups that are large enough to answer the questions that we, the physicians, need answers on the safety and the efficacy of the various types of treatment that are available.
And we need disability insurance carriers to actually believe this is an illness -- a disabling illness -- and do what they should do and pay our patients, after they've paid them for many years, when they are disabled.
We need to educate physicians and other health care workers about this illness so that every single doctor, nurse practitioner, physician's assistant in this country, knows the diagnostic criteria and how to begin to treat this illness.
In spite of all these needs, we don't have to wait to actually help our patients.
Yes, it would be nice to have more. But we have a lot. And we can help right now anyone that shows up at a doctor's door that knows something about this illness.
There are diagnostic criteria that enable clinicians to diagnose chronic fatigue syndrome in the primary care setting.
But given the fact that less than 20 percent of the patients that have this illness actually carry the diagnosis -- they've been to the doctors and been diagnosed -- it's clear we have a long, long way to go. And that is what this is all about, this awareness campaign.
There are effective treatment strategies that clinicians can use to help our patients right now. There's no single treatment, no magic bullet that fixes the illness, that goes to the core of the illness. There are treatments that do help and help significantly. They help in treating the symptoms, increasing the function of the patient, and allowing patients to engage in normal activities of daily living.
It's critical for their patients and their health care providers to know that there is hope and that we can help.
Current best practices for clinical care include things like symptom management, coping skills and improving coping strategies, activity management, exercise therapies, and clinicians can help manage the pain, sleep problems, cognitive difficulties and severe fatigue that accompany this illness, and it's often very debilitating.
We can help patients develop these coping strategies and help them with the emotional support of the illness. We have reasonably effective treatment strategies that can also help with their symptoms. And we can help patients learn to pace their activities and redefine exercise in a way that they function significantly better.
There's a toolkit -- waving the toolkit...
And this is being distributed through this campaign. And this is great. And you can get at it through the CDC Web site.
But the CFS toolkit should be in the hands of every doctor, physician, assistant, nurse practitioner in the country, because this is the key to moving forward. And key to the effective management of illness is the effective partnership with the patient and the physician or the clinician, the health care professional.
It is a great deal of teamwork required to identify the most effective treatment strategy. Its a long and hard process. A person doesn't come to the doctor and walk out that day with a -- their marching orders and their plan. It's a process. And it takes some time and some real effort. And they'll be adjustments along the way -- tweaking -- we tweak.
But we do adjustments to activity level and their lifestyle, coping strategies and then various treatment approaches.
Through good communication and consulting with specialists and other providers, like social workers and physical therapists, it's possible to make a difference in a patient's quality of life and function.
And thanks to the CDC work and the NIH-funded research that's been going on these past 20 years, we continue to research better treatments, treatments that we really hope go to the core and I hope go to the cure of this illness.
It's my hope today that this campaign will be a major step in helping health care professionals understand, diagnose and treat this illness.
Ultimately, however, it's also important for patients to take a proactive role in their health care and become informed and seek appropriate care to manage the illness and its impact on their lives and enable everyone with this illness to have an overall better quality of life.
I call on my colleagues to -- my colleagues in the medical profession to treat CFS patients with the kind of respect and compassion necessary to make this first step.
Thank you very much.
MCCLEARY: Thank you, Dr. Klimas.
And I should mention that Dr. Klimas' group at Miami is one of the recipients of one of the seven new awards just announced by NIH this week.
Last, but certainly not least, I am pleased to introduce Ms. Adrianne Ryan, the only member of our panel who can speak from personal experience about the challenges this condition presents.
Ms. Ryan has served as a member of the CFIDS Association's board of directors since 2000, and she represents the more fortunate end of the spectrum of illness, in that she has made some recovery over the years.
As she speaks, I encourage you to put yourself in her place, to feel the life you know now slip away from you without warning.
RYAN: Good morning, everyone.
I'm honored to be here to speak about my battle with chronic fatigue syndrome. By speaking here today, I hope to demonstrate to those living with CFS that there is hope, that they're not alone; and to those that are not believing that this is a serious illness, to recognize the devastating impact of a life lived with CFS.
Prior to becoming ill with CFS, I was living a very full and productive life. I had graduated from law school. I had worked in network television. And I was beginning my work as a documentary filmmaker. I was involved in lots of community organizations and in my daughter's school.
I loved being a mom to my daughter, Jess, and spending time with my husband, Eric. As a family we shared everything together, from my projects at home to outdoor activities like skiing, rock climbing and white water kayaking. It was the happiest time of my life. I had it all: work, family, friends and, I thought, very good health. This was all about to change.
While working on a film shoot one day, I felt lightheaded and dizzy, so I canceled my interviews and I went home early. I thought it was just the flu; that I'd shake it off in a couple of days and I'd be better. I didn't realize that this was the beginning of a six-year nightmare.
At first, I was in total denial. As a marathoner, I was used to pushing through pain and fatigue, so I kept trying to do things as I normally did. I continued working, I tried to do activities with my friends, but this quickly became impossible.
The fatigue, the muscle pain, the lightheadedness were overwhelming and is completely unlike anything I'd ever experienced in sports.
For the first time in my life, my body had failed me.
My mind was failing me too. I could no longer remember the questions I was supposed to ask in my interviews, or even what I was supposed to buy at the grocery store. I had trouble concentrating. Sometimes I couldn't even answer the phone. I used to wonder, was this really the same brain that had passed the New York Bar exam?
I felt like I was in a bubble and I couldn't get out. I was spaced out, I couldn't communicate with my friends and it was very scary.
So I scaled back my activities at home and at work. I tried to take it easy. I no longer walked my daughter to school or went hiking with my husband. We didn't entertain friends very much anymore.
I started to lose my life. And as much as I lost my life and I missed it, my family missed me.
Sometimes I'd feel better. I would try to do things, desperately hoping that this time I was on the verge of recovery.
But when I tried even moderate things, like going for a walk, I would often collapse, sometimes for weeks at a time. Sometimes even a shower would be too much.
So over and over, the cycle would repeat: I'd feel better, I would try to return to normal, only to relapse again into pain, fatigue and a life of isolation.
I tried doctor after doctor, but most offered little help. They didn't understand the illness or even realize that there were treatments available.
Well-meaning but uninformed people would offer advice. Some would suggest that it was all in my head; that if I tried positive thinking that I could be cured. Sometimes this lack of understanding was almost as painful as the illness itself.
But I was really fortunate. Unlike a lot of people, I had a strong support system in my family and friends. And, most importantly, I also had the support of our champions, Kim McCleary and the CFIDS Association of America. Because without them, without that lifeline, I don't know that I would have had the hope that I would get better.
But today I feel really fortunate to have recovered my health and extremely fortunate also to have the support of the CDC.
I know I can speak for a lot of patients when I say that it feels long overdue, but it is much appreciated.
So it's my hope that this campaign will be a source of support and information for millions of Americans who suffer from CFS, and also to the health care industry who want to provide patients with the best possible care.
Through knowledge comes strength and hope. And in my experience, hope leads to healing.
Thank you very much.
MCCLEARY: Thank you very much, Adrienne.
Many other members of the CFIDS Association's board are here today as well. And on their behalf, I mentioned briefly that the CFIDS Association spent its first dollar on research nearly 20 years ago, and is now the largest source of CFS research funding aside from the federal government.
We're proud to lead national efforts in education, awareness, public policy and research. And we're grateful to those who support our vital efforts, and for the partnership of the CDC, DHHS and the NIH in this important work.
Now we'll move to the question-and-answer session.
If you'll please state your question and your affiliation, we'll do our best to address as many inquiries as possible. We also have 50 phone lines that I understand are filled with media representatives calling in to listen to the conference.
We will also have time after the formal program ends with the speakers here, and also Dr. Suzanne Vernon and George Lange, our photographer for the exhibit, to take individual questions.
If you wish, in your question, for a particular individual to respond, please let me know. Otherwise, I'll try to pitch it to the most appropriate person.
QUESTION: This is for Dr. Gerberding.
It's very clear here from the panel that this whole issue has existed for a while and been more focus on it. Why is the CDC doing this awareness campaign now? How was that decision made to do it now?
DR. GERBERDING: There's a convergence of several things going on simultaneously.
First of all, as you've heard, the science has progressed and I think that publication in April of the Pharmacogenomics work, as well as some of the other recent publications that have helped us define the scope and magnitude, understand better the clinical and epidemiologic manifestations and, more importantly, really led to a -- I think a sorely needed foundation for the recognition of the underlying biological aspects of the illness.
So one major reason is the science is there and we need to respect and make that science more visible.
I think the second reason is that the network of capacity has really evolved.
Really, starting with CFIDS of America and other stakeholder and patient advocates, working with CDC for a number of years, but growing in strength and number as the research collaborations have evolved and there are more and more people who are focusing their attention on this problem, we have a critical mass to really begin to move it out and to indicate that if we were to have an awareness campaign, we can do something about it.
And I think the last part of this is the investment: in particular, the congressional interest and investment that's helped us be able to support this campaign.
And I might also add, at CDC, the development of our new National Center for Health Marketing. Dr. Jay Bernhardt is here somewhere -- Jay, if you can indicate your presence -- Jay is the leader of the center.
CDC has not only committed to making a concerted effort to support awareness of chronic fatigue syndrome, but to use science as a tool for disseminating information and awareness about a much broader host of public health issues.
So I think a number of things came together simultaneously and said, "The time is now. Let's get our act together and really support this campaign and take the first big step toward raising awareness among the public, the patient community and, certainly, the clinicians."
QUESTION: You've cited quite a bit of research that validates that CFS is actually a real disease.
I'm wondering: Why is there still such a level of skepticism out there in the medical community? Is it simply a lack of awareness among health professionals? Or are there still some areas or some gaps in the research that raises questions that need to be addressed that contributes to that skepticism?
MCCLEARY: Dr. Komaroff?
DR. KOMAROFF: I think there are an awful lot of skeptics I've met who really just haven't read the research literature, don't even know that there are 4,000 peer-reviewed published papers out there.
And I think that's probably the biggest factor, combined with the fact that those people, sort of, took a stand early on as to what they believe and have been reluctant to back off in the face of the evidence they've not made themselves aware of.
QUESTION: Dr. Klimas, what is the latest or best research about physicians' attitudes about chronic fatigue? What do we know about what they think?
DR. KLIMAS: There's some lovely articles by Lenny Jason's group in Chicago that looked specifically at physicians' attitudes and showed that if a physician had a family member or a friend who had chronic fatigue syndrome, they were very likely to know all about it and be comfortable treating it. And if they did not, they were not. And that, more or less, that's the dividing point: If you know someone and care about someone, you're likely to take the time to learn something about it.
Now, remember, it's a relatively new illness. Many of us -- watch the gray hair here...
... graduated medical school before there was such a thing. And we had to go to these CME programs to learn through our own conferencing and reading. Anything that comes up new, it's our responsibility to do so.
When we give talks -- I know when Tony gives talks and I give talks at these meetings, they are packed. They are full. It's just a standing-room-only crowd.
Nonetheless, how do you disseminate this much information to everyone out there? And it takes a campaign like this to really get it going.
QUESTION: Dr. Klimas, I ask you to speculate. Is part of -- perhaps part of the problem, the recognition of this as an illness or a real illness, if you will, the fact that there is no pill that can be prescribed, no treatment for it?
There's exercise, there's management, there's empathy, but if there were a treatment that were promoted, doctors would probably sign on much more quickly.
DR. KLIMAS: Are you saying that there's no drug reps in my office? Because I get...
QUESTION: I don't know.
DR. KLIMAS: No, really. So much of what we learn comes through drug reps through our offices, it may be a biased point of view, but that's true.
No, I would say that that's part of it, and that there's no diagnostic test, a single blood test. If I had a yes-no, like the pregnancy dipstick test -- oops, you've got it; no, you don't -- then that would be very easy for a doctor, at least do the diagnosis.
But then again, these are hard patients. And medical management these days has to be done in six minutes, nine minutes, something like that.
That's not going to happen with these patients. These patients slow your day down.
So that's also something else. I mean, we have a real obligation to do right by people, and you have to be willing to take care of complex medical conditions and spend some time doing it. And it's tough.
QUESTION: Deborah Willis Fillinger (ph); I'm with HRSA. Part of our job is to translate evidence into practice for many of the programs that we fund through HRSA. And as a believing, practicing physician, I find it difficult to find that comprehensive resource around best practices for chronic fatigue. And I'm wondering if there are any plans to create such a simple, sort of, comprehensive resource that would be easily used to disseminate in that kind of environment.
MCCLEARY: We'd be delighted for HRSA to put the toolkit out for all of its physician and provider networks, community health centers and the migrant health centers. We'll work closely with you and Dr. Robinson to accomplish that.
If you're talking about clinical guidelines and other materials, maybe Dr. Agwunobi...
DR. AGWUNOBI: I'd just add that -- let me just replug, the toolkit, I think, is the beginnings of that. It offers not only awareness, but it offers clinicians certain practical steps that they can use to approach a new case of CFS.
Having said that, as my clinical colleagues to the right have indicated, this is an evolving body of knowledge. And I have no doubt that as we learn more, through research and through practice, that we'll begin to document strategies and interventions that other clinicians can then build upon and use.
So there's a natural evolution to how the health system -- the clinical health system approaches an emerging condition. And I think with time you'll find that it gets stronger and stronger, especially if our colleagues have anything to do with it.
DR. GERBERDING: One of the things that I think all clinicians need to be aware of, and also patients and their families, is that people with any chronic disabling disease also have other health problems. And it's important that we not lose sight of the importance of primary care and screening and looking for all of the other conditions that could be coincidental or often go overlooked because of the concentration on the chronic fatigue syndrome illness.
And because of the time of year, I just have to make one very specific point: Please get a flu shot.
Chronic fatigue syndrome is a chronic illness and it is an indication for influenza immunization.
So it's never too late to get your flu shot, and please don't forget that part of primary care prevention.
(UNKNOWN): I just wanted to add one thing. Did Julie Gerberding mention, "Please get a flu shot"?
It's critically important for those who have chronic disease.
But from the discussion that you've heard today, I think it's also important that you prevent getting viral infections whenever you can. And a flu shot's a great way to do that, for at least one virus.
QUESTION: This question is for Dr. Reeves.
I think you had mentioned that the Wichita study showed -- you mentioned that you found that patients who were diagnosed early had better outcomes.
Can you elaborate on that at all? I mean, were you able to get your hands around, in detail at all, the care that patients received and the subsequent -- what does better outcomes mean?
DR. REEVES: We were not able to do that in the Wichita study. We're doing that in our study at Georgia.
What we found was that patients -- and other studies have shown the same thing -- that patients who get to primary care physicians early during the course of their illness generally have a better outcome than those that go in later and generally have a better outcome than those that end up in a referral clinic.
But in the Wichita study, we were trying to find out some basic descriptors. We did not address that in great detail. We are addressing that in much more detail on the Georgia study.
QUESTION: Dr. Komaroff, do you have any insight?
DR. KOMAROFF: No, I don't.
MCCLEARY: That is actually one of the reasons that the campaign moved forward is that finding that the earlier people get diagnosed and care begins the better the long-term outcome is going to be.
So that intervention -- that education intervention is as important a part of the overall treatment strategy as anything else that you'll find in the tool kit.
QUESTION: I had a question for Adrianne.
I had a question about how you recovered and if you were able to reclaim both your family and your professional life.
RYAN: I personally was fortunate to have found a combination of complementary and traditional approaches that might not work for everyone but that were helpful to me and that involves a lot of dietary and lifestyle modification.
And I'd be happy to speak to you later on if you'd like to address this further.
QUESTION: Correct me if I'm wrong, but it seems like drug companies are not doing a lot of research in this area as of now. And do you think this campaign -- this awareness campaign might change that and might, kind of, create a push for drug companies to perhaps focus more on this condition?
(UNKNOWN): I think the question was why there's not more (OFF- MIKE) drug companies. And so I'm not sure that I can respond to that, except that -- well, why don't I turn that back over to you, Nancy, as one who treats?
But I think her question was -- talked about more research -- why is it we do not see, and she used the term "drug companies," investing in this kind of research.
DR. KLIMAS: You know, it's an interesting thing, because the first drug company that gets an effective therapy out will become the gold standard by which all the other ones have to be -- you'll have to compare to it.
So it's a market thing. You'd think, "Oh my gosh," you want to be the first one out, because anything that comes out afterward has to be compared to that. And that's going to be the gold standard for a very long time.
So it has been discouraging.
I will say, though, that there are drug companies now coming to us with protocols -- or wanting us to design protocols. They're willing to work around medications that are already out there and put new labels on them or whatever. I mean, there are some studies like that that I think will be coming down the pike. And some are already under way. So that's exciting.
DR. REEVES: I think part of the problem with therapy is what I alluded to and what I was talking about, what Dr. Komaroff talked about.
We don't know what the lesion (ph) is. So we have an idea what the pathophysiology involves. Right now, we do not have a lesion (ph). There may be more than one.
Much of the research is try to identify that lesion (ph). The new grants that NIH have put out really are very much addressing where that lesion (ph) may be. And the drug industry will base what it's doing on the research findings that can get at where the lesion (ph) is, what the effective therapy is.
DR. KLIMAS: I also think it's helpful to have the new numbers. When we thought there were 50,000 people in 19 -- whenever that was -- '84 or something, there was no interest at all, being an orphan drug.
So now there's the numbers of a million, my gosh, that should certainly get the interest of anyone that is an investment-type person.
QUESTION: Following on what you just said, Dr. Klimas, reassure us, based on what you just said. When there were 50,000, it would have been an orphan drug.
Now many, many more people fall under the label of chronic fatigue, and you and all of us have heard in the past complaints about the labeling of diseases in our culture: that things fall under the appropriate label, then they're appropriately promoted, then appropriately treated, and everyone is convinced to ask your doctor if this thing is right for you.
So reassure us that that dynamic is not what's at work here in our 1 million sick people who would benefit from treatment.
DR. KLIMAS: I think I should let Dr. Reeves reassure you, because his science and the science of Lenny Jason's work group at the University of Chicago -- Northwestern in Chicago...
DR. KLIMAS: Oh, DePaul. Oh, that other med school.
Don't put that on TV. DePaul, excuse me. Thanks.
Anyway, Lenny Jason and Bill Reeves' group both have done these excellent community-based research projects looking at prevalence. And you can't fault the data; you can't fault the method. It's excellent.
MCCLEARY: Any other questions?
Well, thank you all for joining us today.
If you need any additional information or access to experts or patients as you file your stories, please don't hesitate to talk with me or other members of my staff in the back of the room. We will try to make ourselves visible.
We also have the transcripts of today's program available electronically. If you would like that, the tall gentleman in the back of the room, Mike Greenwell, will take your cards and we will get that file sent to you today.
So again, thank you for being with us. Thank you for your interest. And thank you for reporting on chronic fatigue syndrome.
- Historical Document: November 3, 2006
- Content source: Office of the Associate Director for Communication
- Notice: Links to non-governmental sites do not necessarily represent the views of the CDC.
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