Top Seven Myths

Misinformation can kill. Let’s put these myths to bed.

Myth: ME/CFS is when you are tired a lot.

Fact: For the severe cases, a patient’s experience is more like a “living death,” much more than just being tired. Nausea, headaches, dizziness, cognitive problems, light sensitivity, vertigo and pain, in addition to feeling like their body is made of lead, can be so debilitating that many sufferers are largely housebound or bed bound. Symptoms can be mild, medium or severe.  It is also not uncommon for sufferers to make some recovery only to relapse later and become bedridden again, sometimes for years.

Myth: ME/CFS is a psychological problem.

Fact: Most ME/CFS patients have immune system abnormalities, infection reactivation, abnormal brain scan readings and many other biological signs of an organic disease. Some of the symptoms, such as a sore throat, swollen lymph nodes, and low grade fevers are not associated with psychiatric problems but are associated with infections or immune system responses.

Myth: ME/CFS is a disease of middle-aged women.

Fact: ME/CFS can strike anyone at any time. Children as young as four and people as old as 70 can develop the disease. Men of all ages also develop this disease. While middle-aged women make up a large percentage of cases, teenagers of both genders are also commonly seen in our patient community.

Myth: ME/CFS is not infectious.

Fact: ME/CFS has occurred in outbreaks reported to the CDC in the 1980s. It also occurred in an outbreak at the Royal Free Hospital in the 1950s. Other outbreaks of illnesses with similar or matching symptoms go back to the early 1900s in numerous countries. Many experts now think these illness outbreaks were really what is now called ME/CFS, even though they were given other names, such as atypical poliomyelitis, encephalitis, abortive poliomyelitis, Akureyri disease, Iceland disease and epidemic neuromyasthenia. This has led to researchers looking into whether viruses or retroviruses are the cause.

Myth: ME/CFS is not fatal.

Fact: A January 2011 study in the Journal of Health Psychology said that over 10 years, the mortality rate among patients with ME/CFS is 12.5%, which is higher than the population at large.

A 2006 study of 166 deceased ME/CFS patients shows an increased risk of premature death from the following:

• General population average age of death from cancer  – 72, ME/CFS patients – 47.8
• General population average age of death from heart failure – 83.1, ME/CFS patients – 58.7
• General population average age of death from suicide – 48, ME/CFS patients – 39.3

One study suggests the immune system abnormalities seen in these patients would explain increased risk for cardiac failure. Another study suggests low C0enzyme Q10 may be a factor in cardiac failure.

A few well-known cases of ME/CFS patients who died from the illness:

• An inquest into Sophia Mirza’s death showed she died from  acute renal failure as a result of dehydration, caused by chronic fatigue syndrome. She died at age 33.
• Annabel Senior died at 60 years of age in 2003. According to her husband, CFS was listed as the cause of death. She had severe food intolerance.
• Allison Hunter died in 1996 at age 19 from infections and other complications as a result of ME/CFS.
• Casey Fero was diagnosed with ME/CFS at the age of nine and died at age 23 from myocarditis, which means he had heart damage.

The National CFIDS Association has a memorial to ME/CFS patients who died. For some of them, the death came from complications as a result of ME/CFS.

Myth: Most people recover from ME/CFS within a few months or a year.

Fact: While many patients do see some improvement, and about 10% say they have recovered, many of those have relapses and some never see any substantial improvement for decades after the initial onset. Often relapses are severe and long-term.

Myth: Cognitive behavior therapy and graded exercise therapy are the best treatments for the disease.

Fact: With varying criteria for determining patient cohorts for research, all touted treatments are controversial, leaving patients subject to the biases of the physicians. Any study that includes people with major depressive disorder is not valid in claims of effective treatments, as studies show that about half the people with ME/CFS do not have depression. When examining effective treatments for ME/CFS, the patients in a study must be those who do not have mood disorders to ensure the results reflect improvement in the biological abnormalities of ME/CFS, as opposed to improving symptoms that are a result of a co-morbid mood disorder.

However, having ME/CFS often brings major personal loss and considerable lifestyle changes. Counseling to assist a person in adjusting to these changes, accepting their new limitations and keeping a hopeful attitude despite the suffering, might be helpful to some. While these can be beneficial, they do not cure the immune system, chronic infections or neurological symptoms seen in ME/CFS patients.

Body activity is helpful, as long as the patient does not go to the point of exacerbating the symptoms.  Most patients were very active prior to the onset of their illness. So most patients have to learn to limit their activities. The greatest danger for most patients is not that they will do too little, but that they often get into a “push and crash” cycle by trying to do too much. Depending on the severity of the illness, some find they can only stretch in the bed for a few minutes each day. Some find they can do light housework for 15 minutes each day. Others find they can take a thirty-minute walk. When a patient feels symptoms, such as fatigue, they have likely gone too far and started the cascading multi-system dysfunction that leads to a crash. Many physicians recommend that one minute of body activity should always be followed by three minutes of rest.

Also, many patients need to be reminded that mental activity is still activity and will drain the body of energy. Therefore, limiting mental activity with regular breaks should also be included.

All researchers agree that more effective treatments need to be found.