Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Mild would be good for someone working full time, having minor to moderate difficulties but still being able to participate in after work activities.
Moderate for part time work only and still being able to do some after work activities a couple of times a week, but needing to rest more, the disease is starting to seriously interfere with daily life which is clearly noticeable. This is where we should get help, stop working and start pacing.
Severe should be for anyone who needs to choose between work and any other activities. If someone goes back home and barely makes it to cook meals and have zero after work activities, that is already severe. Living just for work and then suffering instead of resting and enjoying life, is not living. We need to fulfill our basic needs to remain psychologically and emotionally healthy, if a disease doesn't allow it, such stage shouldn't be named as mild or moderate.
It could've been Stage I through Stave IV like cancer.
Agreed. I was diagnosed after testing with Dysautonomia, a verified condition through neurology medical testing. I also have verified and tested for Hyperadrenergic Postural Orthostatic Tachycardia. And then I also have Encephalomyelitis (swelling of the brain and spinal cord after exertion) that was tested with imaging. I was “diagnosed” with ME/CFS as well, but even though I fit all criteria, there is still no agreed upon medical test for it. In my mind the ME/CFS condition for me is just an aspect of the Dysautonomia and other conditions I have. ME/CFS is the only condition I’ve been diagnosed with that had no test for.Exactly. I'm still not sure I 'believe' in ME/CFS - meaning that I'm not sure if it's a bucket of many illnesses or one unified field theory of disease. Since we vary so much in symptoms, that makes it even harder.
However, to try categorizing people with ME/CFS or any other neuroimmune disease in such narrow ranged charts is just not practically possible in my opinion. Depending upon the week and time of year I would fit “moderate” and “severe” equally.But moving the previously severe state to 'mild' to make room for worse levels seems silly.
I agree with your main points.....Stages suggests the illness develops along a trajectory. And maybe it does. Another aspect of this nobody is studying. Progressing thru stages. What is driving those stages?
I think we've done a generally poor job identifying milder stages of this. Mild is a category extensively ignored by the researchers.
Nobody has ever asked me, what happened? How was it I could function somewhat, in this mild state, and that state transformed over two months into a much worse condition. Why is there no interest in what is triggering such shifts in our condition?
I existed for decades in some state defined as mild. I got "much worse" in July 2018; yet I'd been experiencing ongoing deterioration since 1998 when menopause intensified and it took my Sleep.
Sleep became un refreshing; this created intense anxiety that made my very difficult work, that much more stressful. I recall when the vision issues made driving at night, impossible. You can't safely get home from a meeting. This creates more STRESS.
So activities which might trigger Me Not Sleeping, became all the activities I needed to avoid. Those included fun activities. Fun leaves your life.