• 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.

    To become a member, simply click the Register button at the top right.

ME vs "Autoimmune Encephalitis"

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Hmm never heard of that before, I have had a pretty bad case of chronic encephalitis from my lyme disease though, complete with hypo perfusion..

It is really intense stuff sometimes thats for sure!
 

SOC

Senior Member
Messages
7,849
My sister had encephalitis and ended up in ICU after having several seizures. I don't think you can compare this to ME.
If there is encephalitis in ME, I don't think it is thought to be severe acute encephalitis as experienced by your sister. I think the thought is there might be subacute encephalitis, which would still cause problems, but not the same ones as acute encephalitis. At the same time, I don't think there's clear evidence of even subacute encephalitis in ME/CFS, but I doubt there's been any good research on the topic either way.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
A spect MRI scan would show any hypo perfusion consisent of possible mild chronic encephalitis..

Also yeah Acute encephalitis is a completely different danger level, and issue then sub acute inflammation and minor hypo perfusion..

I hope your sister is doing well now @TigerLilea
 

Daffodil

Senior Member
Messages
5,875
I think a functional SPECT scan is better. I had horrible brain fog/swelling feeling and my regular SPECT scan was normal!
 

Aerose91

Senior Member
Messages
1,400
I got ME from encephalitis. The acute phase was everything you can think encephalitis could be, then once that passed things changed as the ME became predominant. However, I still occasionally get seizure like episodes and still have motor function/proprioception problems that came from the encephalitis.

There are various types of autoimmune encephalitis but as stated earlier, ME is more of a subactute. In autopsies they have done on ME patients they have found capillary inflammation in the brain stem and base of the brain.