CFS Tuesday

Part of our ongoing series on life with CFS

Yesterday was Memorial Day in the United States. The official purpose of the holiday is to honor all those who have given their lives in service to the country. But it made me think of another kind of memorial.

Many CFS advocates believe that Chronic Fatigue Syndrome kills. That position is most definitely not held by the CDC and medical establishment. I've had trouble deciding whether this illness can be classified as fatal.

How do people with CFS die? Many people believe that secondary illnesses - separate illnesses that result from having CFS - are significant risks. Clearly, being confined to a sedentary lifestyle by CFS puts us at increased risk of things like diabetes, heart disease and osteoporosis. There is also anecdotal evidence that people with CFS have an increased risk of some cancers, including non-Hodgkins lymphoma. Then there are the suicides. Excruciating pain, especially when inadequately managed by treating physicians, and secondary depression are the most frequent causes of CFS patients taking their own lives.

Two individual cases are of particular interest. Casey Fero died from myocarditis at the age of 23. Myocarditis is a viral infection of the heart muscle. Did Fero's CFS -affected immune system leave him vulnerable? In 2006, a British Coroners Court determined that CFS led to the death of Sophia Mirza. Specifically, the court found that death was caused by "acute aneuric renal failure due to dehydration arising as a result of CFS." To my knowledge, this is the first time CFS has been listed as an official cause of death.

Is CFS fatal? I'm not certain. The causal link is not as clear as in other illnesses; if you have a heart attack and die, the cause is direct. CFS is not like cancer, where the chain of causation is clear. AIDS is a better model. No one dies of AIDS; patients die of opportunistic infections after their immune systems are crippled by HIV. But the evidence for CFS is not as clear-cut. This is yet another area that deserves medical research. If I am at an increased risk of certain cancers or renal failure or myocarditis, then I need to know that. I need to know how to monitor my health.

As for suicide, that is the ultimate preventable tragedy. Patients with CFS need adequate pain management from healthcare providers. There are so many options now for pain control. And patients who suffer from depression deserve compassionate and appropriate treatment. We cannot be cured of CFS (yet), but we should not be discarded or ignored.