One of Long COVID’s Worst Symptoms Is Also Its Most Misunderstood (mentions ME/CFS)

[Alvin2]

One of Long COVID’s Worst Symptoms Is Also Its Most Misunderstood
Brain fog isn’t like a hangover or depression. It’s a disorder of executive function that makes basic cognitive tasks absurdly hard.

On March 25, 2020, Hannah Davis was texting with two friends when she realized that she couldn’t understand one of their messages. In hindsight, that was the first sign that she had COVID-19. It was also her first experience with the phenomenon known as “brain fog,” and the moment when her old life contracted into her current one. She once worked in artificial intelligence and analyzed complex systems without hesitation, but now “runs into a mental wall” when faced with tasks as simple as filling out forms. Her memory, once vivid, feels frayed and fleeting. Former mundanities—buying food, making meals, cleaning up—can be agonizingly difficult. Her inner world—what she calls “the extras of thinking, like daydreaming, making plans, imagining”—is gone. The fog “is so encompassing,” she told me, “it affects every area of my life.” For more than 900 days, while other long-COVID symptoms have waxed and waned, her brain fog has never really lifted.

https://www.theatlantic.com/health/...-brain-fog-symptom-executive-function/671393/
Open the article in a private window if you get a paywall

 

[hapl808]

Ed Yong is probably the best journalist covering long Covid and its relation to ME/CFS. A series of articles where he really manages to get a lot of things right without overstating the science. Overall I've been pretty impressed with his coverage.

 

[Alvin2]

I feel like this article really explains a lot.
Or at least it speaks to me
I'm going to try rereading it tomorrow and see what i come up with.

 

[Wonkmonk]

Helps a lot to explain to others.

https://twitter.com/i/web/status/1569302974811308032

https://www.theatlantic.com/health/...-brain-fog-symptom-executive-function/671393/

 

[Alvin2]

I beat you to it
https://forums.phoenixrising.me/thr...its-most-misunderstood-mentions-me-cfs.88581/

 

[L'engle]

Good article but includes the usual:

"Most people with brain fog are not so severely affected, and gradually improve with time. "

How many of us with ME have had our brain fog improve enough to be able to work. The article makes it sound like you won't be a theoretical physicist again but you can probably do normal work. Even 'simple jobs' would be beyond most of us.

I swear even the most enlightened articles make it sound like "it gets better over time", making it seem less serious. And these are the well-meaning writers who've done their research.

 

[Rufous McKinney]

"Most people with brain fog are not so severely affected, and gradually improve with time. "

we have to forgive Ed Yong this bit of a slip up. ( I love his work, such a great journalist)

We can't even define the term.

Can't get diagnosed with it.

Can't even explain what do those words FOG and BRAIN mean?

And we certainly do not know about gradually improving with time.

With time, I became far worse ME sick. He should have asked me!

 

[Rufous McKinney]

Most people with brain fog

There is fog, and there is FOG.

There is fog, so you wave your hands around a bit, now I can see!

There is fog: around here they call it tule fog. You can't see one foot ahead of you.

We have got to come up with a better framework than this!

 

[hapl808]

How many of us with ME have had our brain fog improve enough to be able to work. The article makes it sound like you won't be a theoretical physicist again but you can probably do normal work. Even 'simple jobs' would be beyond most of us.

It's so hard to define. I wouldn't have even admitted it for the first 15 years. I couldn't do things I used to do and my IQ likely dropped 20+ points, but I still functioned within certain limits.

The last 10 years got much worse, particularly the last 5 years.

But I always say, it's very hard to get other people to understand when we don't really understand. And when I was moderate, I genuinely didn't understand the severe people. It sounded so alien to me that I mostly ignored it. Unfortunately, it feels pretty alien, too.

we have to forgive Ed Yong this bit of a slip up. ( I love his work, such a great journalist)

Agreed. Even here there's plenty of disagreement on how to characterize things, but overall Ed Yong has done better articles about long Covid and ME/CFS than anyone else I've seen in major media.

 

[Rufous McKinney]

It's so hard to define.

My Brain fog is hooked into my Sjorgrens probably eye problem. And then the tinnitus goes off when I'm PEM or crashing.

It feels like all the this hooked together. So Im having so much trouble FOCUSING my eyes which are so impaired, and then its ALSO the fog....

 

[L'engle]

I'm glad to see a journalist making an honest and in-depth attempt to understand. It's just frustrating sometimes how far there is to go. I just think if I read that as a healthy person I would think "oh well, they get better over time so what's the big deal?" That could be the unfortunate take away for a lot of people.

 

[Alvin2]

This thread suggests the brain fog is caused by high CCL11. And apparently Metformin reduces it.
https://forums.phoenixrising.me/thr...-are-starting-to-lift-wired-jul-1-2022.88096/

I started a new thread on this:
https://forums.phoenixrising.me/threads/have-you-taken-metformin.88587/

 

[Andryr]

They do not get better over time. They get forgotten over time or die silently or are getting ignored forever. Saying we get better works as a coping mechanism. 'We do nothing because they get better'. So simple.

 

[Alvin2]

They do not get better over time. They get forgotten over time or die silently or are getting ignored forever. Saying we get better works as a coping mechanism. 'We do nothing because they get better'. So simple.

It would be more accurate to say they improve slightly from the acute phase.

 

[Wayne]

So Im having so much trouble FOCUSING my eyes which are so impaired, and then its ALSO the fog....

Hey @Rufous McKinney -- You may want to check out this thread I started several years ago.

Stronger, More Resilient Eyes From Rosemary Eyewash

Since I posted that, I discovered that mixing DMSO with magnesium oil, and applying it over my eyelids has improved my eye health considerably.