From M.E. back to "me"

ME/CFS is a real physical illness (not psychological as many believe) that, for many, can be as severe and disabling as a cancer patient going though chemotherapy or a late stage AIDS patient. 

 

This page will discuss the symptoms and diagnostic criteria from the medical perspective.

 

If I had to give a summary to someone, I would say...

    ME/CFS is a systemic illness. It can affect nearly all systems of the body. Endocrine, immune, neurological, digestive and cardio-vascular. It affects the muscles, the metabolism and cell energy. It may be triggered by environmental toxins (including foods, personal care and cleaning products, other chemicals and mold), viruses, or severe physical or emotional stress causing an internal toxic overload of cortisol. It is not yet known why a person may be susceptible to ME/CFS. 

The main symptoms of ME/CFS are profound, debilitating fatigue which is made worse by exertion. A person with ME/CFS may speak of having a crash. Depending on the severity of their illness, a crash can come by over extending their activity beyond their energy ability. For some, this can be as little as taking a shower, or walking to the mailbox. But the result can be ending up bedridden for days, weeks or even months.

Besides fatigue and post exertional collapse, a person with ME/CFS has unrefreshing sleep. Meaning, they may sleep for hours and hour and never feel rested. For some this may be a sleep disorder, but for others the cause is unknown. And its beyond just a feeling of needing more hours of sleep. Its a "to the bone" kind of tired.

Some also suffer from cognitive impairment, what may be referred to as "brain fog". It's what I like to call mental fatigue. Sometimes  my brain, like my body, gets over worked and just shuts down for a while.

Another problem is disfunction of the autonomic nervous system. Also called dysautonomia. This is the part of the nervous system that is responsible for all the things your body does automatically, like regulate your blood pressure, heart rate, body temperature and digestion. This may be the reason so many systems of the body are affected. Many with ME/CFS suffer from orthostatic intolerance. That's the inability to remain sitting upright or standing because of the disregulation of heart rate and blood pressure. Generally, in a healthy person, when you stand up your blood vessels constrict, allowing your blood pressure to remain stable. For a person with orthostatic intolerance, they stand, the blood pressure drops and so might they. It can cause dizziness or fainting or a general feeling of being unwell.

 

Other major symptoms can include muscle pain, flu-like symptoms, swollen or tender lymph glands, recurrent sore throats and headaches. This is likely caused by the viral factor.

 

In February 2015, the Institute of Medicine (IOM) developed a new criteria for diagnosis of ME/CFS and a possible new name of Systemic Exertion Intolerance Disease (SEID). You can find more info in the links below, as well as other organizations criteria. 

 

I have mixed feelings about the name, but overall feel the new criteria is a step in the right direction.

 

After reading through the presentation, it helped me to realize how I have been explaining things all wrong, which many of us do. Calling this fatigue, because its been ingrained in us by the horrible name, does not fully explain the illness and its effect on us. When I read the definitions of exertion intolerance, I realized that more fully describes it. It's not only that you're tired all the time, it's a disabling, all consuming kind of tired that is made worse by pushing past your limit. That limit is hard to gauge. One day you might be able to go shopping, but the next day you're in bed because of it. You went too far and you didn't even know it. Another day, just getting a shower may be more than you can do. It can seem impossible to manage some days, because you just don't know.