Chronic fatigue syndrome (CFS): No cause, no cure, no hope? No way, says Suzanne Vernon, Ph.D., Scientific Director of the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America in the Nov/Dec installment of the Post‘s Medical Mailbox. For those not familiar with CFIDS, it’s important to understand that this kind of fatigue isn’t merely feeling tired after a busy day or a lousy night of sleep. It’s severe, all-encompassing, and often accompanied by persistent problems with memory, joint pain, and feeling sick after exertion (see “Quick Guide to CFS” after the interview below). But the chronic disease has a misleading name, an unclear cause, and symptoms you can’t see. In this web-exclusive report, we continue our conversation with Vernon about the challenges surrounding chronic fatigue syndrome and the “tremendous urgency” of researchers to better understand, diagnosis, cure, and even prevent the distressing and persistent problem.
Post: Is CFS a “real” disease?
Vernon: There are more than 4,500 papers in the medical literature that describe disturbed or altered biology in people with CFS, so, yes, the disease is very real. The U.S. Centers for Disease Control & Prevention estimates that at least one million American men, women, and children have CFS. But its devastating effects are sometimes hard to see; people with CFS can look relatively well, especially to those who see them only on a relatively “good” day. Confusion also stems from the possibility that the disease may have several causes, and the fact that it has been described by different names at different times, such as post-viral fatigue syndrome, myalgic encephalomyelitis (ME), chronic fatigue and immune dysfunction syndrome (CFIDS), and ME/CFS.
Post: Is there a specific test or symptom that signals CFS?
Vernon: None have yet been identified, and CFS remains a diagnosis of exclusion. This means doctors diagnose CFS by ruling out other medical and psychiatric diseases that could explain a patient’s symptoms. The medical definition of CFS crafted in the late 1980s is woefully nonspecific. Today, we are addressing the need for better diagnostics and treatment through strategically guided research based on knowledge gained over the past 25 years of CFS research and from other areas of science and medicine.
Post: Are researchers making strides in finding the cause or causes of the disease?
Vernon: There is a great deal of published evidence that acute infection with a variety of different pathogens can lead to CFS in about 10 percent of the cases. So, infection is a plausible cause, possibly in combination with an underlying immune system vulnerability. Understanding who is at greatest risk for severe infection, detecting these infections early, and learning more about the immune response are important approaches to preventing CFS in the future.
Keep in mind that we don’t know the cause of most chronic diseases, yet progress is possible. For example, the “War on Cancer” signed into law by President Richard Nixon in 1971 was aimed at improving cancer treatment and finding cures by increasing research. Indeed, there has been important progress, especially in cancer screening and treatment, even though we still don’t know the cause of most cancers.
Likewise, important findings from more than two decades of CFS research gives me hope that effective treatments will be identified. Currently the handful of physicians in the U.S. who have dedicated their medical careers to caring for CFS patients use a combination of treatment strategies to help patients improve function and quality of life. It requires a partnership and a trial-and-error approach that can be time-consuming and frustrating to both patient and physician. In the future, chemical biomarkers identified by CFIDS Association-funded researchers could help guide treatment using more objective and targeted approaches.
Post: What are biomarkers?
Vernon: Biomarkers can be thought of as indicators not only of disease, but also of response to treatment or even good health. Think of cholesterol, for example. Cholesterol is vital for life, but high levels of bad cholesterol are a biomarker indicating increased risk of cardiovascular illnesses. Biomarker research has found certain molecules on blood cells that occur at different levels in CFS patients compared to healthy people and people with other diagnoses. Other studies on CFS biomarkers may help identify characteristics of people who do not recover from an acute infection and why that might happen. In addition, we are finding that differences between CFS patients and other groups often show up more clearly when the subjects are studied after a short exercise challenge. Post-exertional relapse is one of the hallmarks of CFS, and it seems to provoke a different biological response than testing patients at rest.
Post: What do people struggling with CFS need to know?
Vernon: There is hope. Right now, awareness about and interest in CFS are at an all-time high and there is tremendous urgency within the scientific community to address the need for better diagnostics and treatment through strategically guided research based on knowledge gained over the past 25 years of CFS research and from other areas of science and medicine. While some research is not panning out, other areas are heating up. There are new technologies such as genomics, proteomics, and imaging that give us new tools to understand biological abnormalities at the molecular, cellular, and clinical level. The CFIDS Association is laser-focused on making CFS widely understood, diagnosable, treatable, and preventable, and we are making faster progress than ever before.
Quick Guide to Chronic Fatigue Syndrome (CFS)
* People of every age have CFS, but the illness is most common in those ages 40 to 59.
* More than 80 percent of CFS patients in the U.S. don’t know they have it.
* CFS includes four or more of the following characteristics (in addition to fatigue): symptoms that relapse after physical or mental exertion; unrefreshing sleep; substantial memory or concentration problems; muscle pain; pain in multiple joints; headaches of a new type, pattern, or severity; sore throat; and tender neck or armpit lymph nodes.
* CFS is not caused by depression, although the two illnesses often coexist. Many patients with CFS don’t have any psychiatric disorder.
–CFIDS Association of America
RESOURCES: www.cfids.org
10 Comments
I have been disabled by CFS for 17 years. This illness destroys lives. But all the research underway gives me hope. Thank you for covering this important story, and thank you to scientists like Dr. Vernon who are working to turn my hope into reality.
Hi Jennie, How are you coping with the pain and depression caused by CFS after 17 years. I am using 7 different vitamins, 350mg of effexor and 20mg of oxicodone daily. I have been through all of the antidepressants. because CFS. increases in strength. If I stop any of the meds CFS becomes intolerable. if i stop all the meds The pain is intolerable. I would die because of the bone crushing pain.
I can relate, Jenni and Max – I’m disabled since ’06 .. not sure what’s worse, the pain or not being able to walk, it’s a nightmare.
I’m happy to say that most of this article is good. However, the Headline and last things people read are usually what people take away and this is what they will take away:
“Conquering Fatigue” and “Many people with CFS don’t have a psychiatric disorder.”
Please correct these errors. The name of the disease is M.E. or “CFS” not ‘fatigue.’ This is like calling Leukemia or ME ‘fatigue.’ Yes, fatigue is perhaps the major symptom of all three diseases, but calling these diseases ‘fatigue’ is misleading.
Also readers may get the false impression that the ‘scientific community’ is all over the “CFS” problem.
Plus, what about the fact that according to CAA, it is now “laser-focused” only on research and not being in the media, due to patient protests that CAA has long misrepresented the disease and patients.
I guess the pledge to stay out of the media was worthless. In fact Vernon is now saying they are ‘laser-focused’ on making “CFS” “widely understood”, among other things. I guess doing interviews with the media is part of making “CFS” ‘widely understood.” : (
I forgot to add that the science shows that pwME have no higher rates of psychiatric disorders than people with other serious physical diseases like MS.
I was 34 years old in the spring of 1986 when I was suddenly, in an instant, struck down by CFIDS – which means I’ve been afflicted with this disease for going 26 years now. Up until the spring of 1986, I thought I was perfectly healthy but since then have developed many other health problems. This disease absolutely destroys a person’s normal lifestyle. I am still praying and hoping for a cure. Exhausted in Sierra Vista, AZ!
I have had CFS since 1986. I was virtually housebound for 10 years, then entered a brain injury study involving hyperbaric oxygen therapy. After months of treatment I was able to go back to work but that was all I could do. Due to work schedule I could no longer get the hbot (hyperbaric oxygen treatments). My focus turned to eating fresh foods. Avoidance of processed foods is essential. After years of supplements, behavior modification, and eating healthy I felt well enough to start dating (at age 54). I got married oct. of 2010 and relapsed several months after marriage. I now have a portable hyperbaric chamber in my home and am making a come back. HBOT has been a life saver for me. Most physicians are skeptical about HBOT but I urge CFS patients to do their own research & confer with a physician that specialized in HBOT.
Shelley, I was 38 in 1988, it was april and I have never felt the same since. This disease is hell on earth. Throughout the years I have done the best I could but now I am so weary of the fight. How can one carry on when my body aches so much too weak to cry. I know your situation because I’m there right along with you. Not Hot in Cleveland.
I am not trying to be negative here whatsoever but the reality is there has been to much filth within the medical community and to day this continues to happen!!
Numerous children are now deceased as a result of all these wrong doings and complete inhumane neglect!! It is now time that patients/families across the globe
join forces to ask for full public and also criminal enquiries into these inhumane attitudes! To this day the illness is still dismissed within the medical community
and patients are laughed at and denied any chances for proper care and/or immediate clinical trials.This same attitude has gone on for decades and will
continue and in the end it is the patients who suffer and die as a result of these sick attitudes!! Is this really the way to treat people as a whole in this fasion who
prior to their illnesses were taxpayers and productive people of society. No one deserves these cruel and complete inhumane neglects that are going on and
continue to this day!! We need full public and criminal inquiries and let those who should be accountable including also the insurance industries be brought to
justice and let the public as a whole know the full truth about this devastaing chronic illness they called ‘chronic tired syndrome’ and patients get full monetary
compensations for all theIR losses!! Is this illness actually a misdiagnosed entity that was just dismissed by the medical community because of their complete
neglect then if that turns out to be the case then civil lawsuits ‘will’ be forthcoming!! Sincerely Aidan Walsh Southampton, U.K. p.s. How many more
children have to die before this illness is given its proper status as a genuine chronic ‘physiological’ illness instead of comical phycological
stupidity…PUBLIC/CRIMINAL ENQUIRIES NOW!!
I come to ME/CFS research after a decade of investigation into low level radiation syndrome and Gulf War Syndrome and am absolutely convinced there is a significant overlap with ME/CFS. All of these conditions involve neuroimmune dysregulation triggered by an assault upon the immune system. All may be seen as a maladaptive reaction in which errant cytokine networks set off cycles in which the human machine, in effect, goes haywire.
The strong weight of evidence indicates that ME/CFS constitutes a spectrum which differs in severity and clinical course. Where a patient falls on the spectrum does not necessarily correlate with illness severity, but to the constellation of symptoms and the triggering event. (ME can be viewed as being on the more neurologically affected end.) Thus Gulf War Syndrome, which was found to be triggered by the chemical agent pyridostigmine bromide (contained in protection pills given to U.S. and British troops to counter Soman nerve gas) resulted in a thousands of service personnel developing illness symptoms, and a certain percentage of those developing ME/CFS. Likewise, the most detailed review of studies of the health effects of the Chernobyl nuclear power accident found a percentage of those victims developed CFS. [Yablokov AV, Nesterenko VB, Nesternenko AV, Chernobyl Consequences of the Catastrophe for People and the Environment, New York Academy of Sciences (2009) at 107-111.] I would postulate that the Fukushima nuclear disaster will lead to an increase in ME/CFS in Japan.