An Explanation of Myalgic Encephalomyelitis (Part 1)

Note: To be clear from the very beginning, the osteopath I have been seeing has diagnosed me with a chronic case of mono, so I have not yet been diagnosed with Myalgic Encephalomyelitis (affectionately known as my D.L.F. [Dear Little Friend, for those of you who aren't Lewis readers] ME).

What follows here is my explanation and understanding of a medical journal article which was the published research of the Internal Consensus Criteria made available in the Journal of Internal Medicine in 2011. You can find the article here online or in PDF format. The ICC has broken down the symptoms of ME into four groups. Under these groups are a number of subcategories, and so many symptoms must be present from each group or one from each subcategory in order for a patient to be diagnosed according to these criteria. If you are eager to test your understanding of medical terms, I am sure you will find the journal article more interesting. If you're not so eager to spend a few hours trying to understand a 13 page document, I hope my explanation will suffice.
ME causes dysregulation of the central nervous system, immune system, cellular metabolism, and cardiovascular system. According to the ICC, it is 'an acquired neurological disease with complex global dysfunctions' from which 50,000 people suffer. These are the symptoms.

1.) Postexertional neuroimmune exhaustion.

On my worst days, when I attempt to think deeply about something, my mental state quickly becomes a confusing fog of swirling words and concepts. The very thought of supporting my body in order to sit or eat is exhausting. Sometimes I try to force myself to do things. Such forcing my body to obey me might bring on another state of exhaustion even deeper than the first, lasting at times for a few hours.

On a day where I seem to be 'normal', I might be able to do something mildly strenuous, such as take a walk or attempt a light workout. After taking that walk or light workout, I might face a severe worsening of another symptom, such as muscle weakness, lightheartedness or dizziness, feeling feverish, or labored breathing. Often times going places, preparing a meal, reading a book, or simply sitting upright and working at my computer will also trigger these worsening of symptoms. (Just as an example, I have had a headache most of the time while writing this post and have to take frequent breaks to rest my eyes and lay down.)

On any day, whether good, bad, or in the middle, every activity completed or even attempted comes with a recovery period because my body is unable to muster the energy it needs to sustain me through daily activities. This recovery period can last twenty-four hours, a few days, or even a week. The strenuousness, chemical exposure, lighting, temperature, and activity all determine how long the recovery time might be. As a general rule, it takes me much longer to recover from time spent running errands than it does to recover from studying.

My lack of stamina varies in severity from mild, to moderate, to severe, to very severe. I would currently place myself in a moderate category, which means I am mostly housebound. Yes, I can get along fine for a few hours out running errands, studying at Starbucks, or (most difficult) a trip to church, but I am much more comfortable at home where my brain has less information to process and fewer choices to make.

Since this post in its entirety would be quite lengthy, it will be published in four parts. Stay tuned for the next update explaining the neurological impairments of ME!