THE QUIET EPIDEMIC
by Elena Greco
Typical reading time: 3 minutes
March 15, 2016
Many people have not heard of Chronic Fatigue Syndrome (CFS)—an unfortunate misnomer, since the disease is not about being “fatigued.” It is known by several other names, including Myalgic Encephalomyelitis (ME), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), and Systemic Exertion Intolerance Disease (SEID). It affects all systems in the body. According to the CDC, “This illness strikes more people in the United States than multiple sclerosis, lupus, and many forms of cancer.” It is an increasing epidemic in our country and the rest of the world; more than a million people in the US have been diagnosed with CFS, and since it takes most sufferers about five years to be diagnosed, there are likely at least several million, which means that this affects several times as many people as AIDS in this country. And like AIDS, CFS occurs throughout the world.
It has a myriad of symptoms, the most notable of which is an intolerance to exertion. If a sufferer goes beyond their “energy envelope,” the result is a crash which lands them in bed for a lengthy period. Other symptoms are cognitive issues (referred to as “brain fog”; some physicians believe this is caused by inflammation in the brain), memory problems, fainting, chills, recurrent or chronic fevers, chronic sore throat, joint pain, flu-like symptoms, muscle weakness, headaches, inflammation, and more. Some sufferers are completely bedridden, cannot work, and require home care for years, while others are able to function to some extent, but at a much lower level of production than before the disease struck. Many say that it is like having a terrible, permanent case of the flu.
To date there are no real answers as to cause, although many believe it is an autoimmune disorder. There are no definitive tests for making a diagnosis. CFS has been known to the CDC since at least the 1950s, but that agency and our government ignored it and suppressed information about it—whether for financial reasons or a desire to keep the cause hidden due to culpability is unknown. It is unfortunate that records were deliberately not kept or collated into a database in the many cases of the disease that have occurred since the 1950s through the 1990s. There is still no method of collecting data about this disease from physicians, who are on the front lines of this disease.
Although there are clusters of occurrence at times—possibly caused by exposure to a common immune stressor, such as a virus—there is at this time no evidence that CFS is contagious. In the 1990s, a few famous people who suffered from the disease made it public (director Blake Edwards, Julie Andrews’ husband, had it for the ten years prior to his death and appeared in a documentary about it, I REMEMBER ME), and this prompted a recognition by the CDC.
Until very recently, there did not seem to be a genuine effort in the US to get to the bottom of this disease or to help its sufferers. There still has been no concerted effort to create a database of sufferers and their lab results. The NIH declared that it is about to do a “study” of about 40 people—but then they promptly appointed as Director of the study a man (Brian Walitt) who had very publicly declared that he believes the disease is psychosomatic! This will clearly not be a valid study and will be a huge waste of taxpayer dollars. And recently a bad-science study came out of the UK that indicated that psychotherapy and exercise were all that were needed to “cure” the disease. It had no scientific validity, but of course it received publicity, and this was a set-back to the millions of people who suffer from CFS, who have waited for years for the public and the government to help them.
There IS a mountain of evidence that exercise causes a relapse or worsening of symptoms in CFS sufferers. And “thinking differently” about their symptoms does not help them any more than it would help AIDS sufferers to think differently about their symptoms. One of the worst aspects of this disease for sufferers is the lack of understanding by others of their disease. The unfortunate name used in the US, “Chronic Fatigue Syndrome,” does not help. Although the medical profession has tried to change the name, the original one has been around for so long that we seem stuck with it.
It is unfortunate that many who had COVID-19 developed a syndrome referred to as “Long-Haul COVID” or “Long COVID.” The symptoms of that syndrome are virtually identical to those of ME/CFS. Since the CDC is taking that syndrome very seriously, it is possible that there will finally be some research that benefits not only Long-Haul COVID sufferers, but those with ME/CFS.
We need research—good, scientific research—and an increase in publicity in order to get to the bottom of this disease and start to provide real help for people whose lives are devastated. We also need to get the word out that this is not a contagious disease so that there is less stigma for CFS sufferers to admit they have the disorder. There are things that work to help sufferers, but they are not being made public due to the stigma involved. CFS sufferers need to help each other. Recognition by the public is half the battle. There are still too many doctors who do not even know about this disease. Pressure on Congress to allocate funding for research is imperative. If you can, please spread the word so that people become familiar with the disease and its various names.
Here are a few references and resources:
See Elena’s bios for more information about the author.