What is M.E./CFS, myalgic encephalomyelitis/chronic fatigue syndrome?
M.E./CFS is a chronic, potentially-fatal, disabling, crippling neuroimmune disease with dysfunction of the immune system, thus affecting every organ system, especially the neurological and endocrine systems. It can isolate many as bed-bound, wheelchair-bound, house-bound with no treatment and no recognition from their doctors. It is not so uncommon yet it is one of the most unknown of chronic, serious, severe diseases. Millions are ill with it and it is mocked as lazy and fraudulent. Many children suffer from M.E. Many ill with it end their lives/commit suicide after suffering for possibly 30 years with no recognition in isolation. The extreme light, noise, and movement sensitivity can leave those ill in a dark, quiet room for years. Because we “pay for it” later once we participant in basic activities of daily living (showering, eating, etc.), you may see us out in public one day and then disappear in bed for days or weeks or months afterward. We appear healthy yet we are very ill. Many doctors simply prescribe exercise, which can actually cause severe damage. These people desperately need hope!! A cause must be found with biomedical research if we are not to be seen as lazy and for a cure to be found. Please help by spreading awareness and/or donating.
Visit Brenda’s Quick Terminology page on her blog Our Invisible World for short descriptions of some neuroimmune diseases: https://ourinvisibleworld.wordpress.com/quick-terminology/
What does it feel like to have ME/CFS?
( More of this coming soon!!!!!! ;-D )
The world passes you by, moving on with their lives while you are sick in bed. It varies in severity and some people can have relapses where they are worse than their baseline function. One’s severity could last consistently for decades or it could be in relapses that last days, months, or years.
Where some one is on the scale of severity would depend on their overall condition and their current relapse status. This scale is our subjective way of trying to paint a picture for you:
25% of those with ME/CFS are severe and moderate-to-severe
100% paralyzed and bed-bound; caregiver brushes teeth and completes self-care; fed with a feeding tube; on a ventilator to do the breathing for the patient; etc.
Wheel-chair bound; staying in the same bedroom for weeks before leaving the room.
Spending 70% of waking hours in bed; only leaving bedroom for bathroom, eating meals, and bathing.
Only leaving home to walk 1 or 2 blocks once week; may make it to the store once a month; not able to work support one’s self financially.
Only holding a minimally difficult job and doing basic self-care but needing to spend all your free time resting and not getting to experience life to the fullest such as spend time with loved ones or have any hobbies such as reading.