The unsolved mystery of one of the most misunderstood and controversial illnesses, chronic fatigue syndrome (CFS), is to be probed by US health and medical bodies. Their aim is find the cause of the disease suffered by more than a million Americans; and to identify accurate diagnosis and effective treatment that will help them get well again.
The Centers for Disease Control and Prevention (CDC) verifies there is no known cause for CFS and myalgic encephalomyelitis (ME), a similar, but possibly different disease. Because of the many mysteries encompassing CFS and ME, there are also no quick or accurate ways to diagnose the conditions. Additionally, these afflictions are considered by many to be untreatable.
Chronic fatigue syndrome is typically characterized by extreme tiredness (or fatigue) that doesn’t abate after rest, and can be aggravated by either mental or physical activity. But it has a number of other symptoms as well including, ironically, an inability to sleep well. The condition also typically starts with symptoms that are similar to influenza, which is why several decades ago it was often termed “yuppie flu.”
Like fibromyalgia sufferers, CFS and ME patients are often accused of psychological issues. Many have to see multiple doctors before their condition is diagnosed, and according to research, more than 60 percent of them wait for more than a year for a positive CFS diagnosis. Furthermore, those participating in research studies report that there is a dire lack of understanding within the medical community. Many of them have experienced a total “lack of knowledge and empathy” from physicians, while others have faced “hostility.”
New Initiative to Diagnose ME and CFS
Last week the Institute of Medicine (IOM) launched an initiative to develop “clinical diagnostic criteria” for ME and CFS. This followed more than two years of work by the Department of Health and Human Sciences (HHS) following an instruction by President Obama that the HHS and National Institutes of Health (NIH) should elevate the priority of CFS, a recognized health crisis affecting more than 1 million Americans.
According to Dr. Nancy C. Lee, HHS Deputy Assistant Secretary for Health and federal officer for the CFS Advisory Committee (CFSAC), it is particularly important that their findings and recommendations reach people in the health care profession who have patients that have not yet been diagnosed. This, she said, would include both primary health care providers and specialty groups, because it was essential for them to “know about this serious condition.” It was also vital for all CFS/ME patients to have access to health care providers who were able to “at least suspect the diagnosis.”
This is a desperate situation for so many, and my hope is that this study will be a major step in improving the clinical care and lives of these patients.
Dr. Nancy C. Lee
Conditions to be studied would be ME, CFA, as well as Neuroendocrine Immune Disorder, Chronic Fatigue and Immune Dysfunction Syndrome, and others, she announced. While they might be “distinct disease entities,” there was also a possibility that these illnesses were “part of spectrum.”
Dr. Lee outlined the four primary tasks to be undertaken in the study, the first of which would focus on important signs and symptoms that would enable doctors and health care givers to diagnose ME and CFS. They would also develop criteria that would assist clinicians. The terminology used to describe ME and CFS is highly controversial, and so reassessing this would the third task, she said, adding that she agreed the title CFS is harmful to patients. Lastly, there would be “an outreach strategy” that would define the illness to health professionals nationwide.
In general, the IOM is to tackle clinical diagnostics that will overcome the long-established mystery of the disease. The NIH will look at definitions, and consider whether the current names, chronic fatigue syndrome and myalgic encephalomyelitis, need to be changed. A number of agencies that are involved with the CFSAC are co-sponsoring the venture with the HHS Office on Women’s Health. Results of the research will be revealed in 2015, including cause, and developments made in clinical care options and drug development for treatment.
Research to Solve the Mysteries of ME and CFS Launched
Participating in the first public meeting of the IOM’s new committee on January 27, President and CEO of The CFIDS Association of America, Carol Head said her organization, which funds research, was dedicated to the development of “safe and effective treatments” for ME and CFS. Using the acronym for chronic fatigue immune dysfunction syndrome (CFIDS), the organization’s mission was to ensure that these linked diseases were understood, diagnosable and genuinely treatable.
Head said the task of those involved in this new research would be hampered by the limited available research. Right now, she said, there were no “uniformly-accepted clinical diagnostic criteria” and so there was very slow progress getting to grips with the illness. Even the FDA has recognized that when it comes to ME and CFS, researchers are only just beginning to understand the core of the disease. So they needed to “go back to core” and look for signs, symptoms, and any evident decreases there may be in specific functioning of those suffering from the disease.
When there is confusion, lack of consensus and no progress, go back to core.
Earlier this month the CFIDS Association carried out a survey that involved 256 people, 88 percent of whom had been diagnosed with CFS/ME or post-infective fatigue (PIF). Most had waited “a desperately long time” for a diagnosis. They found that 12 percent had waited for ten years; 21 percent for five to ten years; 36 percent for one to five years; and only 32 percent stating it took a year or less to be diagnosed.
Most of the patients said they had been to more than four doctors in their struggle to get a diagnosis. Not only was this demoralizing, said Head, but it cost money and implied that time and quality of life had been lost. The reality was that the longer a diagnosis takes, the worse the condition becomes and the harder it is to treat.
This implies time lost, quality of life lost, demoralization and precious dollars spent.
CFS/ME Clinical Assessment
The CDC started its own “multi-site clinical assessment” of CFS and ME two years ago. The aim of this study is to compare CFS and ME patients to see if they are suffering from the same disease or not. New definitions for the diseases are not an objective.
Dr. Beth Unger, the scientist heading the study, said in a recent interview that they hoped to develop “diagnostic criteria” for these diseases. The mystery of “post-exertional malaise,” also known as “post-exertional neuroimmune exhaustion,” is an important symptom they hope to be able to measure. The first stage of their study involved getting data from patients that related to symptoms including fatigue, sleep patterns, pain, and general ability (or non-ability) to function. They also collected information from these participants relating to medical history, details of their illness, laboratory tests undertaken, family history, infections, immunizations and so on.
The second stage of their study was launched last November and now they are measuring “wakening cortisol response” from saliva they have collected. Blood from participants would also be used for “a small biorepository of DNA and RNA” that they hope to use to replicate findings they get from other groups. According to Dr. Unger, the methodology they were using for the study was evolving and younger patients would now be included, as would healthy people for comparison.
Once all the necessary data has been collected, Dr. Unger said the program would focus on the development of educational materials for health care workers, to help them recognize and treat chronic fatigue syndrome and ME. Ultimately once the mystery is solved, the cause and suitable treatment should be found.
By Penny Swift