By Erica Verrillo*
There is a great deal of mythology surrounding ME/CFS. This is due, in part, to the perpetuation of popular stereotypes in the media. But 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 – 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: Stress does not cause diseases. 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. Correcting a patient’s “illness beliefs” cannot reduce the physiological effect or severity of a disease.
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MYTH #5: ME/CFS is just being tired all the time.
FACT: 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. The reason 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 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: Any experienced ME/CFS specialist can diagnose the disease. The reason GPs make referrals to endocrinologists, neurologists, and gastroenterologists, is that a specialist’s knowledge is required to diagnose complex diseases. In the case of a complex illness like ME/CFS, specialists take a detailed history (ME/CFS is frequently sudden onset), and order immune system and other tests to rule out the possibility of endocrine, autoimmune, or other diseases with similar symptoms. 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.
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. The same is true of ME/CFS.
There are numerous palliative treatments that can lessen the severity of specific symptoms such as insomnia and pain. By reducing the impact of these symptoms, quality of life is considerably improved, and a patient may be able to function again. Experimental 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 all people who are ill.
See ProHealth’s Treatment Section for more information.
* Erica Verrillo is ProHealth’s expert editor for the ME/CFS HealthWatch and Natural Wellness newsletters. She is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, available as an electronic book on Amazon,Barnes & Noble, Kobo and Payhip (PDF file). Her website,CFSTreatmentGuide.com, provides practical resources for patients with ME/CFS. She also writes a blog, Onward Through the Fog, with up-to-date news and information about the illness, as well as the full text of CFS: A Treatment Guide, 1st Edition (available in translation).