There is a great deal of mythology surrounding ME/CFS. This is due, in part, to the perpetuation of popular stereotypes in the media, particularly those that foster an image that people with ME/CFS are “stressed,” have “Type A personalities,” or that it affects only middle-class women. Unfortunately, many of these myths are also promulgated by official agencies (such as the CDC in the U.S.) which are not up-to-date on ME/CFS research or epidemiological studies.
MYTH #1: ME/CFS is an illness that primarily affects white, middle-aged, affluent women.
FACT: ME/CFS strikes all ages and all socioeconomic groups. The myth that the illness, which was formerly dubbed “yuppie flu” by the media , is confined to affluent white women is based on the patient population referred to ME/CFS specialists. Because most visits to ME/CFS specialists are not covered by insurance, only those with means can afford to see them. A study performed in 1999 by Jason et al. found the highest prevalence of ME/CFS among minorities and people with lower levels of education and occupational status.
MYTH #2: ME/CFS is caused by stress.
FACT: There have been over 60 documented outbreaks of ME/CFS. Any illness that strikes hundreds of people within a short period of time is caused by a pathogen. The notion that illnesses can target people with certain personality traits (the “Type A” personality) has no medical or scientific basis. Microbes are not personality specific.
MYTH #3: ME/CFS is a psychiatric disorder.
FACT: Numerous studies have documented abnormal immune system, endocrine system, and nervous system function in patients with ME/CFS. There have been consistent findings of reduced natural killer cell (NK cell) function, which is indicative of viral infection, B-cell abnormalities associated with autoimmune disease, and elevated pro-inflammatory cytokines, associated with immune activation. In addition, there are documented abnormalities in cardiac function, endocrine deficits, and inflammation in specific areas of the brain associated with memory and cognition. None of these is consistent with a primary psychiatric diagnosis.
MYTH #4: ME/CFS can be effectively treated with exercise and cognitive behavioral therapy (CBT).
FACT: This myth originated as the result of a study performed in Great Britain called the PACE trial. The authors of the study claimed that after a year of graded exercise therapy and CBT, patients with ME/CFS improved. Many researchers and clinicians have pointed out that the study design was seriously flawed, and that the results of the study in fact showed no significant clinical improvement.
A regular exercise program not only can exacerbate ME/CFS, it can cause relapse. The reason exercise is contraindicated is that, unlike healthy people, exercise reduces oxygen uptake in patients with ME/CFS. Studies conducted by Betsy Keller at Ithaca College and Staci Stevens at Workwell Foundation have confirmed that with repeated exercise, patients with ME/CFS absorb less oxygen, thereby leading to anaerobic metabolism and reduced energy output at the cellular level.
CBT is not a treatment for any disease. Diseases are not caused by faulty thinking, they are caused by pathogens and other environmental assaults. Correcting a patient’s “illness beliefs” cannot reduce the physiological effect or severity of a disease.
MYTH #5: ME/CFS is just being tired all the time.
FACT: Although a profound relentless fatigue is characteristic of the disease, ME/CFS is more than being tired. Numerous symptoms are produced by the illness, affecting every system in the body. These can range from vision problems, to sleep disturbances, to migraines, to muscle pain and weakness, and a host of others.
The hallmark symptom of ME/CFS is post-exertional malaise (PEM). In patients with ME/CFS, any exertion, mental or physical, can lead to a profound exacerbation of all symptoms and collapse. One of the reasons for this collapse is that ATP, the molecule that is produced in the mitochondria of cells, is not regenerated rapidly in patients with ME/CFS. Mitochondrial impairment is also the reason people with ME/CFS experience diastolic (heart) dysfunction, muscle weakness, and reduced oxygen uptake.
Because lower ATP production affects every system in the body, it can lead to exhaustion, but nearly all patients experience cognitive impairment, disruption of normal sleep patterns, and muscle and joint pain, all of which are consistent with mitochondrial, as well as subsequent immune, endocrine, and neurological dysfunction.
MYTH #6: Children do not get ME/CFS.
FACT: Children of any age can contract ME/CFS. In 1985, there was an outbreak of ME/CFS in Lyndonville, NY, involving several hundred children. There are important differences between adult and pediatric ME/CFS: 1) It strikes boys and girls equally, whereas adult ME/CFS strikes women more than men; 2) In adolescents it frequently follows mononucleosis; and 3) Children tend to experience all of their symptoms with equal severity. While the majority of children recover, some remain ill for many years.
MYTH #7: ME/CFS is difficult to diagnose.
FACT: If GPs have trouble diagnosing ME/CFS, it primarily because they lack knowledge about the illness, not because the illness is difficult to recognize. ME/CFS is not covered in most medical school curricula leading to a deficit in physicians with a basic understanding of ME/CFS. However, any doctor experienced with ME/CFS can diagnose the disease.
In order to diagnose patients, ME/CFS specialists take a detailed history and order tests to rule out the possibility of endocrine, autoimmune, or other diseases with similar symptoms, such as Lyme disease and hypothyroidism. They also order confirmatory tests that can demonstrate immune system abnormalities. Most important of all, they ask patients how they feel after exercise. If a patient reports improvement after exercising, it is not likely he or she has ME/CFS. Sudden onset of the illness, often after a flu-like infection, is also highly indicative of ME/CFS.
MYTH #8: ME/CFS can’t be treated.
FACT: Any illness can be treated. In the case of illnesses that are chronic – that is, those which have no cure, such as diabetes or congestive heart failure – treatment consists of managing the symptoms of the illness and slowing its progression until a cure can be found. The same is true of ME/CFS.
Numerous palliative treatments can lessen the severity of individual symptoms such as insomnia and pain. Common secondary infections, such as small intestine bacterial overgrowth (SIBO), can also be treated. By reducing the impact of these symptoms, quality of life can be considerably improved, and a patient may be able to function again.
Global treatments, such as Ampligen and Rituxan, can address the immune dysfunction that drives ME/CFS. Supplements can help support the body’s ability to heal itself, and provide the necessary nutritional boost needed by people who are struggling with a chronic disease.
Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37. http://www.ncbi.nlm.nih.gov/pubmed/10527290
Mark VanNess, PhD, Christopher R. Snell, PhD, Staci R. Stevens, MA. Diminished Cardiopulmonary Capacity During Post-Exertional Malaise. Journal of Chronic Fatigue Syndrome, Vol. 14(2) 2007. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.505.8873&rep=rep1&type=pdf