- Last Updated: 23 January 2016 23 January 2016
ME/CFS is a serious, usually chronic, multi-systemic, physical illness
Despite what you may have heard or been told, it is essential to know that ME/CFS is a real and serious physical illness.
The international medical researchers and clinicians who have done the best and most rigorous scientific work and treated thousands of patients are in full agreement that the illness is organic and not psychologically caused. Even the Centers for Disease Control and Prevention (CDC) has finally officially endorsed this view.
ME/CFS involves pathology in multiple systems of the body including: the immune system, the neurological system including the brain, the endocrine system, the cardiovascular system, as well as other systems and organs. A list of common ME/CFS symptoms makes this abundantly clear, as well as Dr. Anthony Komaroff's article The Physical Basis of CFS.
Please note: For those people who already have ME/CFS, if new symptoms develop during the course of the illness, don't just assume that they are new or variant symptoms of ME/CFS. People with this illness can develop new illnesses that require diagnosis and treatment. So, if new symptoms are present, err on the side of caution and see a physician to rule out another illness. If s/he seems unnecessarily casual about it, seek a second opinion. Dr. Rosalind Vallings of New Zealand has warned that late diagnosis of cancer is a problem and patients need to report new symptoms and attend to having regular cancer screenings.
What causes ME/CFS?
The cause of ME/CFS is not yet known, but current research shows strong evidence of immune, neuroendocrine, and circulatory system dysfunction. Research indicates that some parts of the immune system may be in an overactive state, while other parts of the system may be in an underactive state. There is convincing evidence that viruses or persistent viral fragments are associated with ME/CFS in many cases.
The authors of ME/CFS: A Primer for Clinical Practitioners (p. 43) have this to say about causality:
"ME/CFS usually occurs as sporadic (isolated) cases, but clusters of cases have occurred worldwide. Some outbreaks have affected large
numbers of individuals in a particular community, hospital, or school. In sporadic cases, 20% of patients have another family member with the illness. These facts suggest that both genetic and environmental factors may contribute to the illness.
"ME/CFS frequently starts with acute, 'flu-like' symptoms and immune system changes found in ME/CFS are similar to immune system changes found in some viral infections. A number of infectious agents have been found more frequently in patients with ME/CFS than in the general population, but no infectious agent has been proven to be the cause.
"To avoid any possible contamination of the blood supply, patients with ME/CFS should refrain from donating blood.
"Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a
"Although depression and anxiety may occur secondary to the illness, research studies have shown that ME/CFS and major depressive disorder
can be distinguished by behavioral, immunological and hormonal testing.
"The Centers for Disease Control and Prevention (CDC) recognizes CFS as an organic syndrome, not a psychiatric disorder."
What is the typical course of illness for ME/CFS?
ME/CFS may last many months or years. Symptoms may vary in severity and may wax and wane. A 25-year follow-up of his patients by Dr. David Bell found that some of his patients recovered, but some of those who didn't became increasingly incapacitated. The 10+ Long-term CFS Study found that the predominant symptoms became more neurological in patients ill more than fifteen years. More recent studies have found similar results.
Research has shown that there is no "typical" course of the illness. Both of the studies above found this. However, a 2014 New York multi-site study of ME/CFS patients ill more than five years found that temporary remissions, sometimes lengthy, were common.
While there is no known cure, many of the symptoms can be treated. Some patients show improvement over time, while others may show little improvement or a worsening of symptoms. The best strategy is for a patient to accept the fact of the illness and to develop coping skills that will make the situation as tolerable as possible. It is also important not to entirely give up on life, while waiting for the illness to resolve. It might not. See the section Living with ME/CFS for coping suggestions and the section on Treatment.