Viral menigitis followed by ME diagnois

[Suffolkres]

https://www.meningitisnow.org/support-us/news-centre/meningitis-stories/kiris-story/


Viral meningitis has been truly life changing for her, leaving the previously outdoors active person who was always out walking her dog almost entirely house bound, dependent on a wheelchair outside and needing an assistant to help her do basic things. She recounts her experience here......


....
Started to look for answers
“I started to look for answers and got brushed off by the hospital, which made out it was all in my head. That was so very invalidating and an extra trauma. Eventually I got diagnosed with ME and discovered, too late, that pushing through and graded exercise can permanently progress post viral conditions. There doesn't seem to be a proper medical diagnosis for 'viral meningitis after-effects'. I think it really needs to be properly recognised, just like other post viral conditions are.....

“Later, as I continued to decline, I was diagnosed with POTS symptoms/orthostatic intolerance (an inability to remain standing due to heart rate issues) and had specialist testing that proved I had a vestibular dysfunction affecting my balance.

 

[Creekside]

This viral infection may have been the trigger, but not the cause of her ME. I had viral meningitis ~10 years into my ME: it made my ME symptoms worse for a couple of days.

I do agree that ME needs to be recognized more easily by physicians, whether it's post-infection or any other trigger. The lack of a clinical test for ME means that it requires more time from a physician, so doctors won't want to get patients with possible ME, and might look for any methods to avoid doing the necessary time-consuming diagnostic procedures. I suppose dealing with that is a matter for ME advocacy groups.

 

[alex3619]

I am an encephalitis survivor, from measles in 1968. MOST survivors wind up with a range of ME related symptoms from what I have read, and its often disabling. It is unknown if this is generally ME or only sometimes ME or an ME-like condition. There is no data I have been able to find though I have not looked as hard as I would like.

This is an active viral infection of the brain. The research is almost entirely on the acute phase. There is no follow up.

I have had doctors describe it as things like "post encephalopathy", which is basically them putting labels together, not a substitute for real research.

Given the similarities of symptoms of ME and encephalitis I currently consider it as valid as a cause for ME as Covid is. That is to say it looks likely but this does not substitute for proper research. Covid has a lot of research going on right now, encephalitis survivors get nada. I rely on ME research for most of my information and ideas.

To indicate severity of infection, though modified with some infections by new treatments, the death rate for acute encephalitis approaches fifty percent. Half of the remainder have obvious brain damage. The quarter who survived without obvious brain damage apparently live happily ever after. Nothing to investigate here.

It is unclear to me how close the story on encephalitis is to ME and meningitis.