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Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments - Scientific american

wabi-sabi

Senior Member
Messages
1,458
Location
small town midwest
"One study found that in people with neurological COVID symptoms, the immune system seems to be activated specifically in the central nervous system, creating inflammation. But brain inflammation is probably not caused by the virus infecting that organ directly. Avindra Nath, who has long studied postviral neurological syndromes at the National Institutes of Health, found something similar in an autopsy study of people who died of COVID. “When you look at the COVID brain, you don't actually find [huge amounts of virus, but] we found a lot of immune activation,” he says, particularly around blood vessels. The examinations suggested that immune cells called macrophages had been stirred up. “Macrophages are not that precise in their attack,” Nath says. “They come and start chewing things up; they produce all kinds of free radicals, cytokines. It's almost like blanket bombing—it ends up causing a lot of damage. And they're very hard to shut down, so they persist for a long time. These are the unwelcome guests” that may be causing persistent inflammation in the brain. "

And then later..

"Nath, who also studies ME/CFS, says that “we think mechanistically they are going to be related.” Researchers suspect that ME/CFS, like some cases of long COVID, could be autoimmune in nature, with autoantibodies keeping the immune system activated. ME/CFS has been difficult to study because it often arises long after a mild infection, making it hard to identify a viral trigger. But with long COVID, Nath says, “the advantage is that we know exactly what started the process, and you can catch cases early in the [development of] ME/CFS-like symptoms.” In people who have had ME/CFS for years, “it's done damage, and it's hard to reverse that.” Nath speculates that for long COVID, if doctors could study people early in the illness, they would have a better chance of reversing the process."

My interpretation: chronic illness harms your body. Which body parts it damages depends on your disease. For us, it sure looks like the brain. Some injuries can heal, some can't. Think of emphysema- smoking hurts your lungs. You stop smoking, your lungs don't get more injured. But they can't go back to normal completely. Or diabetes- you can get your blood sugar under control, but once you have gone blind from the blood vessel damage, your sight isn't coming back. The implication is that once you have had inflammation from LC or ME/CFS in our brain long enough, this damage isn't going to be repaired either. Even with treatment, some part of our problems will be permanent. Consider MS- there are medications to stop or myelin from being damaged, but once it's gone, we don't et have a way to regrow it.

Of course, I'm having a bad and cynical day, so maybe there is a more positive interpretation.
 

Andryr

Senior Member
Messages
139
Location
Ukraine
Researchers suspect that ME/CFS, like some cases of long COVID, could be autoimmune in nature, with autoantibodies keeping the immune system activated. ME/CFS has been difficult to study because it often arises long after a mild infection, making it hard to identify a viral trigger. But with long COVID, Nath says, “the advantage is that we know exactly what started the process, and you can catch cases early in the [development of] ME/CFS-like symptoms.” In people who have had ME/CFS for years, “it's done damage, and it's hard to reverse that.” Nath speculates that for long COVID, if doctors could study people early in the illness, they would have a better chance of reversing the process.
I think it means "for CFS it is hard to reverse the process so we can identify the initial trigger which caused damage and disappeared". It is an assumption anyway. I don't think they claim the damage is irreversible.
 

Andryr

Senior Member
Messages
139
Location
Ukraine
Hey don't worry about that. We have other things to be worried about . They still know too little to draw conclusions. First there was a denial phase e.g. it's all in your head. Now it's phase 3 - bargaining - "yes some pathogen was there. but now it's gone. What can we do etc." Signs of progress?
 

wabi-sabi

Senior Member
Messages
1,458
Location
small town midwest
Yep sounds like its the process he means instead of actual damage.
The process is causing the damage.

Depending on how long that process goes unchecked, the damage may or ma not be reversible. Process: driving your car over nails and broken glass. Damage: punctured tires. Whether you can put on a patch or need to by all new tires depends on how long and what sort of nail. Stopping the process of driving in and of itself does not repair the tire damage. Understanding the process will let you avoid nails in future.

Process in our brains: inflammation. Damage: getting studied right now. Fixable: how long have you been sick?
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
In people who have had ME/CFS for years, “it's done damage, and it's hard to reverse that.”

Nope, it's quick and easy, even after around 10 years of ME. I had several temporary remissions at around year 10 (hard to remember, I'd have to look it up). One dose of iodine or T2, and within hours my ME symptoms were gone, and I was bouncing with energy. Sadly, it lasted less than 24 hrs, and after a few triggerings of the temporary remissions, it no longer worked. Something had adapted, or been used up, or whatever. Still, it proves that ME damage is not permanent, and not even difficult (three different chemicals each worked as triggers) or slow to reverse.

I haven't had a temporary remission for 10+ years, so maybe it gets more difficult as time progresses, or maybe I just used up my potential triggers.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
In people who have had ME/CFS for years, “it's done damage, and it's hard to reverse that.”

It does sound like Nath is saying that in some cases, ME/CFS does cause damage that can be hard to reverse. I disagree. I've researched ME/CFS for about 15 years and haven't seen any studies that show this.

Also, people have fully recovered, some after decades, without any damage done to their bodies. Rich (something, I forgot his last name) the owner of "Prohealth", another ME/CFS forum, that I think only sells supplements now, fully recovered after 30 years.

So for myself, I respectfully disagree with Nath on this point. If research shows their to be lasting damage in the future, I might change my mind, if multiple studies show that. For now, the research just isn't their.
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
That sounds permanent enough to me. I used to get remission too.

I had several remissions in the first few months of my ME, then maybe a couple more in the next few years. By the time I got the remission from iodine, I was convinced that the inability to switch the disease off was permanent, so the late remission was a very pleasant surprise. I still believe it would be possible to switch my ME off today; it just needs the right chemical in the right place.

Having your ME get worse is frightening, but I've had my ME get worse, or develop new intolerances, but most of those changes eventually passed, so don't lose hope: your worsening might reverse.

I wonder whether the reduction of activity and dietary variation and other normal variations (meeting new people, etc) feeds back to make ME even worse. Has anyone here had severe ME and improved after being forced to change their daily routine?
 

Rufous McKinney

Senior Member
Messages
13,249
My ME is "better"....than it was during a three month vacation in 2019.

I don't have the severe tachycardia and extreme POTSY stuff happening.

Sometimes I will belatedly realize some symptoms has backed off. I need to appreciate that phenomenon.

But mostly I'm just also getting older each day, so at seventy, Reversals of Fortune may be more challenging.
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
But mostly I'm just also getting older each day, so at seventy,

Yah, curing ME isn't going to let us restart our lives from when our ME first started. So sad.

Hey, since ME involves some unknown genetic or developmental abnormality, there's always a teeny-tiny chance that switching ME off will result in reversing ageing. Wouldn't that be nice? Just a happy thought for the day (lets simply not consider the actual value for the probability).