From the Documenting ME blog -
As someone currently receiving hospice care due solely to the effects of ME, it irks me when people claim ME is not a fatal disease. Many, many ME-related deaths have shown that, at the very least, this disease can be fatal. I’ve seen people throw around a statistic which claims the death rate for this disease is 3%. What they don’t realize is most ME experts agree this number is grossly underestimated. Let me explain why.
ME is most similar in nature to another neurological illness, Multiple Sclerosis. Like MS, most ME experts agree there are certain subtypes which exist within the same illness name. The most commonly suggested categories (and those I personally see) are stable (illness remains the same or improves slightly with careful energy planning), relapsing/remitting (illness cycles through better and worse phases), and progressive/deteriorating (illness consistently deteriorates over time, regardless of planning and treatment). Of these three, the second category, relapsing/remitting, seems most common, while the last, progressive/deteriorating, is least frequently seen. Short of a miracle, no one ever fully recovers from ME.If you hear someone who claims to have had ME and is now functioning at 100% normal again, chances are extremely high they never had ME to begin with. Unfortunately, due to the high level of mis-education about this disease, thousands and thousands of people diagnosed with CFS believe they have ME when what they truly have is something completely different. Read my post on ME vs CFS for more on that.
That said, anyone who spends any significant amount of time studying the true nature of this illness will see the tremendous amount of damage it does to multiple body systems. It makes sense that this damage would have a shortening effect on most ME patients’ lives. For example, Dr. Elizabeth Dowsett says of ME patients, “20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.” Dr. Dowsett goes on to explain that the vast majority of these deaths are recorded as general heart failure rather than being officially linked to ME.
Herein lies the problem. Education and general knowledge of ME are so uncommon that for most of us, cause of death will be recorded as a secondary condition, even if that condition wouldn’t have developed without ME. This brings to mind another illness where sufferers nearly always die of secondary conditions: AIDS. People with AIDS generally die of secondary infections which their bodies are unable to fight off due to the effect of the AIDS virus on their system. Yet everyone knows AIDS is a terminal condition. We don’t deny its severity or its life-ending effect just because the final straw is nearly always a secondary condition. The same should be understood about ME.
ME is extremely hard on the body. One survey found people with ME most often die of heart failure, but we die from it on average over 20 years earlier than people without ME who die of heart failure. Cancer is another frequent killer of ME patients, but again, we tend to die from it decades earlier than non-ME cancer patients. Again, this makes sense, taking into account the strain ME places on nearly every body system, including our organs. It’s time for the world to wake up and realize the seriousness of this disease, but how can we expect others to recognize these facts if we ourselves refuse to face up to them?
Not everyone with this disease will die as a direct result of it. Other things can happen. But it is unrealistic and goes against what information we do have to believe that the tremendous strain placed on our bodies by this level of ongoing illness will have no effect whatsoever on the length of life we are allowed. Smoking shortens life. Overeating shortens life. Cancer and AIDS and kidney failure shorten life, despite allowing a much higher overall quality of life than ME. It only makes sense that ME shortens life as well, for some more than others. As someone whom doctors agree is currently dying from this disease, I beg you, don’t minimize its effects when speaking to the public. Don’t ignore people like me. Don’t let our deaths be in vain. Spread the word – ME does kill.