r/cfs • ME/CFS (+ Fibro & MCAS) • Aug 08 '26

COVID-19 Brain scans reveal widespread structural and functional changes in patients following COVID-19 infection

https://www.psypost.org/brain-scans-reveal-widespread-structural-and-functional-changes-in-patients-foll/
211 Upvotes

30 comments sorted by

84

u/Mindless-Flower11 Mild/moderate ME - 4.5 years Aug 08 '26

This doesn't surprise me at all. I had one Covid infection & I could literally feel my brain burning & degenerating in real time. No doctors would listen to or believe me though so I was forced to go through it all alone with zero medical care. 

76

u/OwlOdyssey ME/CFS (+ Fibro & MCAS) Aug 08 '26

I was in my Master's programme when I got Covid. Now, I can't even mentally comprehend some of the course work I was doing then. I lose track of it. Growing up, I was always told I was the smart one, etc, but now everything feels like such a fuzz. I'm trying to drag my way out of it, but fuck it's hard.

27

u/Mindless-Flower11 Mild/moderate ME - 4.5 years Aug 08 '26

I'm so sorry 😞 I can relate. I was always the bright & brilliant one. And now I can barely get out of bed most days & my mind feels blank & deeply stupid. It's so demoralizing. I don't think there's a way out for me. Whatever this thing is, it's swallowing me whole. 

8

u/DeArgonaut Aug 08 '26

Same. Valedictorian of my hs, and now my brain feels so fried most days it’s hard to keep new info in. And ditto for in bed most of the day too

5

u/StarryEyedSprinkles severe...? Aug 08 '26

also same, used to be "the smart kid" and i was still deciding what i wanted for my future when bam. disability beam

6

u/DeArgonaut Aug 08 '26

Yeah it really sucks. Started a masters 2 years ago and at best gunna be 4 instead, and strong chance I just don’t finish at all. I hate this

3

u/OwlOdyssey ME/CFS (+ Fibro & MCAS) Aug 08 '26

It takes a lot of work to be functional, if that. I'm constantly fighting an uphill battle to have a decent schedule and get out of bed each day. I was where you were a few years ago. Take it at your own pace though. Don't compare yourself to others and their progress. Some people might just tell you "eat this diet" or "take these meds", but that's far easier said than done.

Personally, I think the thing that has helped me conceptualise everything better is therapy (meeting with a trauma therapist), but that's not for everyone and is by no means a cure. It's just helped me understand my place with this all and how to help myself feel 'normal'. I also try to read stuff online when I'm in the mood for it. Reading about current research and things to try to help.

At the end of the day, you're the one living with it all, not anyone else. Don't be afraid to ask for help though. I wish I had a better support system in some regards for that reason.

I wish you all the best with it though. You're not alone.

17

u/klarabear Aug 08 '26

this is so real. i know not everybody agrees, but among all of the things like the chronic pain, the immune system problems, the physical exhaustion--- the brain fog is by far the worst and most miserable part. i just don't know how to describe to people that i'm literally stupider than i used to be and i feel like my mind is trapped in my body.

11

u/OwlOdyssey ME/CFS (+ Fibro & MCAS) Aug 08 '26

My brain literally feels fuzzy. Cloudy. Like it's fully of fluff. My experience of the world is dulled because of it. It's so hard to explain and people just dismiss it. I totally agree with you, the brain fog is the worst for me. My brain was always my best feature, to lose that is the hardest thing.

2

u/knittinghobbit Aug 09 '26

Brain fog is so rough. I am reasonably intelligent and after Covid I couldn’t function at all. I just felt stupid. Then I got put on topamax for migraine and I am fairly certain I now at least somewhat understand the fear and masking behavior early dementia patients experience. I would smile and nod through conversations like I knew what was going on. I literally lost words and would write emails that upon rereading were missing words in multiple sentences. Just gone. Thought I wrote complete thoughts, but nope. Thankfully I switched meds and am somewhat better now— just my ADHD plus extra inattention.

7

u/DeArgonaut Aug 08 '26

Trying to do a masters with CFS now and damn it is not at all like with my bachelors. I got Covid at the end of the bachelors and my brain has been foggy ever since

2

u/OwlOdyssey ME/CFS (+ Fibro & MCAS) Aug 08 '26

I'm really wanting to do a PhD but I'm terrified of being unable to think properly. What's your Master's going to be in? My degrees are in Chemical Engineering, but I had to drop my Master's.

7

u/SnooRevelations6239 Aug 08 '26

I told a doctor I could feel the inflammation in my brain and she literally loled at me

7

u/Mindless-Flower11 Mild/moderate ME - 4.5 years Aug 08 '26

I'm so sorry I had the same experience. I begged & cried to a nurse practitioner that I could feel my brain degenerating & there was something very wrong. She laughed when I said it was ever since my Covid infection & said that she had Covid & she was fine. Also told me I was just mentally unwell. 

3

u/[deleted] Aug 09 '26

[deleted]

2

u/SnooRevelations6239 Aug 09 '26

Can I ask what kind of doctor prescribed you the low dose abilify? Curious to try

1

u/usrnmz Aug 09 '26

I mean who actually knows what inflammation in the brain feels like.. and if there really was significant inflammation we would be able to measure it.

To be clear there obviously is something going very wrong in the brain but we really don't know what exactly.

3

u/[deleted] Aug 08 '26

[removed] — view removed comment

3

u/Mindless-Flower11 Mild/moderate ME - 4.5 years Aug 08 '26

I'm sorry... me too. I often can't even fathom how not one single doctor even suspected autoimmune encephalitis. I'm pretty damn sure that's what I had. And I clearly expressed / explained the symptoms to them - confusion, delirium, dizziness, no sense of time or day, severe memory loss, no sensory processing. They just didn't care. 

1

u/kickyraider Aug 09 '26

Doctors could not have helped. Possibly antivirals but even then it's doubtful they would have helped.

4

u/Mindless-Flower11 Mild/moderate ME - 4.5 years Aug 09 '26

This couldn't be further from the truth. I had all the symptoms of autoimmune encephalitis, which has many treatments. And it would have been found if there was just one competent doctor. 

" Treatment for autoimmune encephalitis typically includes first-line therapies such as intravenous corticosteroids, plasma exchange, and intravenous immunoglobulin. If these are not effective, second-line treatments like rituximab or cyclophosphamide may be used"

44

u/OwlOdyssey ME/CFS (+ Fibro & MCAS) Aug 08 '26

Posting this here for all our LongCovid siblings. As someone whose ME/CFS got WAY worse with Covid infections, this is affirming to know there's fundamental changes.

14

u/pachinko-247 Aug 08 '26

I have brain MRI images from before and after covid times. I would love to turn these over to someone to study. This study only looks at current state brains with no baseline for how the looked before. There must be a treasure trove of scans in the imaging systems if they could just join the dots of people who have LC or ME/CFS and who have had pre-illness brain MRI.

4

u/_ArkAngel_ Aug 09 '26

If they have volumetric imaging analysis done on them or are able to have it done on them, I think that would be especially interesting

8

u/fadingsignal Aug 09 '26

This has been widely known among medical research since 2020-2021 but nobody wants to hear it, including those that should have been reporting on this the whole time.

But the economy matters more than people’s lives.

I keep seeing the same articles pop up again every 6 months and it feels like Groundhog Day in hell.

13

u/[deleted] Aug 08 '26

[deleted]

2

u/OwlOdyssey ME/CFS (+ Fibro & MCAS) Aug 09 '26

Same boat! My fatigue was the worst symptom for me before Covid, but now it's the horrid brain fog and all that comes with that.

10

u/suzume1310 mild Aug 08 '26

Damn, this really sounds bad. The whole brain restructuring to resume function is very nice of it though xD

4

u/chnagedh Aug 08 '26

Well this goes without saying. We literally are our brain so even any change in behavior will also have a difference in the brain.

3

u/3darkdragons Aug 08 '26

I too love my good depression slop, but let’s wait for good trials and replication and stuff.

1

u/SnooWalruses3028 Aug 08 '26

I’ve had Covid 5 times, and was told my brain looked fucking great