In my video "What does ME/CFS Feel Like? I left out the very severe, so I wanted to explain that as best I can secondhand based on what I have heard from many others.

That video:    • What does ME/CFS feel like?  

If you want a first hand window into the very severe experience, I suggest looking at Whitney Defoe's blog here: https://www.whitneydafoe.com/mecfs/

To get an idea of the range or where you might be on it, I recommend the Hummingbird Scale here: https://www.hfme.org/themeabilityscal...

*other things that become unbearable at very severe levels are smells (detergents, soaps, etc.).

Also you can imagine that if your teeth are not brushed regularly (often by a carer) then you get dental issues... and getting to a dentist is a job for an ambulance and causes massive crashing if you can get there at all.

0:00 My Omission of the Most Severe Last Video
0:56 The Most Severe
3:04 The Suicide Rate
3:28 The Most Severe Continued
3:49 On the Milder End
5:46 The Circumstances We are In
6:03 The Hummingbird Scale