Does the pathology of ME/CFS include brain damage?

Utsikt

Utsikt

Senior Member (Voting Rights)
This thread has been split from a thread about a research paper suggesting damage to a specific part of the brain in ME/CFS
A region-specific brain dysfunction underlies cognitive impairment in long covid brain fog, 2025, Yang et al


DHagen said:
Between this and the GWI paper just posted I would be very interested to hear reactions from those who strongly reject evidence of inflammation and/or brain damage in ME/CFS and LC. To my untrained (and likely damaged) mind, the evidence presented here in favor of serious injury to the brain is more compelling than the suggestion that TUS can ameliorate the symptoms (but presumably not restore the lost brain matter), but then, there is much that I do not understand.
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Can you define damage or «serious injury to the brain»?

The evidence against whatever is wrong with pwME/CFS’s brains being structural and permanent is that disability can vary over time and in the people that recover it’s completely gone.
 
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DHagen said:
To my untrained (and likely damaged) mind, the evidence presented here in favor of serious injury to the brain is more compelling than the suggestion that TUS can ameliorate the symptoms (but presumably not restore the lost brain matter), but then, there is much that I do not understand.
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White matter lesions (perhaps due to hypoperfusion/hypoxia?) come to mind. And these have been known to resolve in some cases which could explain the uncommon incidences of recovery.

ETA: I think things like this can boil down to can you have brain damage without apparent structural damage, and I believe you can.
 
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Utsikt said:
Can you define damage or «serious injury to the brain»?

The evidence against whatever is wrong with pwME/CFS’s brains being structural and permanent is that disability can vary over time and in the people that recover it’s completely gone.
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I am currently in favor, and have been on and off for heading toward 30 years, that in ME (not specifally LC) its more a dynamic dysfunction, caused by signaling whether neurological or biochemical. I suspect that something similar applies to LC but with Covid there could easily be surprises.
 
Creekside said:
My experiences with my ME symptoms--including brainfog--abruptly vanishing compels me to believe that there is no injury, but rather a set of biochemicals maintaining the ME state, which can be rapidly reversed.
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I would suggest that something like this or aberrant signaling would qualify as damage. It implies a change in a patient's normal brain make-up/functioning characterized by negative consequences.

An additional question might be what is causing it.
 
duncan said:
I would suggest that something like this or aberrant signaling would qualify as damage. It implies a change in a patient's normal brain make-up/functioning characterized by negative consequences.
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If someone tells you you’ve got brain damage, I think most people would take that to mean that there is a physical injury that probably isn’t reversible. Like a stroke or blunt force trauma injury. Or MS, Parkinson, Alzherimer, etc.

So I think it’s misleading to say that there is brain damage in ME/CFS.
 
Utsikt said:
If someone tells you you’ve got brain damage, I think most people would take that to mean that there is a physical injury that probably isn’t reversible. Like a stroke or blunt force trauma injury. Or MS, Parkinson, Alzherimer, etc.

So I think it’s misleading to say that there is brain damage in ME/CFS.
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But most people wouldn't be thinking of signaling or biochemical or viral persistence or immune abnormality issues. Wouldn't any of these constitute "damage"? Damage is just harm of some sort; it can be reversible or not.
 
Copied post - refers to the research paper that was the topic of the thread it was moved from

Utsikt said:
Can you define damage or «serious injury to the brain»?

The evidence against whatever is wrong with pwME/CFS’s brains being structural and permanent is that disability can vary over time and in the people that recover it’s completely gone.
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With regard to this paper, I would say "atrophy of the right inferior insula" would seem to qualify as potentially serious injury/damage.

With regard to recovery, do we actually have documentation on this? Can we really say that disability is "completely gone"? Outside of random people on the internet claiming that this is the case, I am not aware that there is any certainty that this happens for anyone and the "evidence" that it can occur does not appear to be stronger than any of the other anecdotal claims that get dismissed essentially out of hand here - not because they are necessarily wrong, but because we do not and cannot really know how much credence to give them. If this is not the case, I would be genuinely grateful for additional information!

Utsikt said:
If someone tells you you’ve got brain damage, I think most people would take that to mean that there is a physical injury that probably isn’t reversible. Like a stroke or blunt force trauma injury. Or MS, Parkinson, Alzherimer, etc.

So I think it’s misleading to say that there is brain damage in ME/CFS.
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I would think that "most people" would accept atrophy as damage, but perhaps there is a technical definition of which I am ignorant. As for reversible, that seems to me a separate question and one that needs to be dealt with separately if/when we can document real recovery.

The recovery documented in this paper does not seem very compelling (as @Eleanor indicates above), but to me, the documentation of atrophy does seem significant, though I remain happy to be dissuaded!
 
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duncan said:
But most people wouldn't be thinking of signaling or biochemical or viral persistence or immune abnormality issues. Wouldn't any of these constitute "damage"? Damage is just harm of some sort; it can be reversible or not.
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When talking about damage in a medical context, I’m pretty sure most people would take that to mean more than just something being not right. And for that reason, I think we should avoid using it and stick to either describing the symptoms or talk about specific mechanisms that might cause the symptoms.
DHagen said:
With regard to this paper, I would say "atrophy of the right inferior insula" would seem to qualify as potentially serious injury/damage.
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Atrophy is normal with aging and they have only established correlation between one test score and changes in one region in the brain for covid cases. It’s unclear to me if they checked for the same correlation in the uninfected cases in the UKB longitudinal study. They only report differences in changes in test scores between the groups, and in some of them the LC group did better (with p-values >0.05).
DHagen said:
With regard to recovery, do we actually have documentation on these? Can we really say that disability is "completely gone"? Outside of random people on the internet claiming that this is the case, I am not aware that there is any certainty that this happens for anyone and the "evidence" that it does does not appear to be stronger than any of the other anecdotal claims that get dismissed essentially out of hand here - not because they are necessarily wrong, but because we do not and cannot really know how much credence to give them. If this is not the case, I would be genuinely grateful for additional information!
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There is no reliable data on it for ME/CFS. But from anecdotes from people that have either recovered or experiences significant improvements, their cognitive functioning also improved massively (and some recovered claim completely).

It could in theory be the case that the people that recover are the ones without any permanent damage, so it’s a case of survivorship bias, but considering that most don’t recover and we haven’t seen any reliable evidence of damage, I don’t think we should assume there is any yet.

And wrt LC (or post-covid ME/CFS) vs non-covid ME/CFS, they might not be comparable because we know covid can in theory mess with most parts of the body. So any post-covid damage might be covid-specific and not have anything to do with ME/CFS per se.
DHagen said:
I would think that "most people" would accept atrophy as damage, but perhaps there is a technical definition of which I am ignorant. As for reversible, that seems to me a separate question and one that needs to be dealt with separately if/when we can document real recovery.
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Excessive atrophy is brain damage, I agree with that.
DHagen said:
The recovery documented in this paper does not seem very compelling (as @Eleanor indicates above), but to me, the documentation of atrophy does seem significant, though I remain happy to be dissuaded!
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I agree that the graphs don’t look very impressive.
 
Mij said:
It's not from a study, it's based on a close friends experience. He had hypoperfusion on his first SPECT and PET scan which got him disability benefits, after retesting years later it came back normal, but his brain felt more toxic/poisoned. He had ME/CFS for 18yrs.
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If I had my way, SPECT scans would be SOP in ME/CFS cases. As it is, it is virtually impossible to get one anymore.
 
Sean said:
Do we know this, and how?
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This was my thinking:
Utsikt said:
There is no reliable data on it for ME/CFS. But from anecdotes from people that have either recovered or experiences significant improvements, their cognitive functioning also improved massively (and some recovered claim completely).

It could in theory be the case that the people that recover are the ones without any permanent damage, so it’s a case of survivorship bias, but considering that most don’t recover and we haven’t seen any reliable evidence of damage, I don’t think we should assume there is any yet.

And wrt LC (or post-covid ME/CFS) vs non-covid ME/CFS, they might not be comparable because we know covid can in theory mess with most parts of the body. So any post-covid damage might be covid-specific and not have anything to do with ME/CFS per se.
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Utsikt said:
So I think it’s misleading to say that there is brain damage in ME/CFS.
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I think there's still a lot we don't know about brain damage. I don't think we can rule it in or out for ME/CFS based on evidence so far. We mostly only call it brain damage when we can see it, and are reliant on the standard of imaging that is currently available.

Thinking about the variability in cognitive symptoms in ME/CFS... variability is also seen in what is more traditionally thought of as 'brain injury', the person's ability can vary depending on a whole host of facts and even just randomly over time. I would say similarly to how it varies in ME tbh. But I don't have an explanation for the theoretical people who fully recover with resolution of their cognitive symptoms.

For me, Long Covid has felt like an evolving brain injury. In yr 6 now, I recognise a baseline of cognitive impairment, however some specific areas have improved compared to years 1 & 2, but some areas (esp. memory) are gradually worsening. Cognitive symptoms also acutely worsen in PEM but not to the very severe extent they did in the first few years.
 
Utsikt said:
So I think it’s misleading to say that there is brain damage in ME/CFS.
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I am unclear that there is a more accurate word than "damage". Most alternatives that I can think of (e.g. impairment, dysfunction, impediment, etc.), can connote external influences. "Damage" is specific to the victim. Moreover it spares the patient community from unfortunate and minimizing metaphors like brain fog.
 
duncan said:
I am unclear that there is a more accurate word than "damage". Most alternatives that I can think of (e.g. impairment, dysfunction, impediment, etc.), can connote external influences. "Damage" is specific to the victim. Moreover it spares the patient community from unfortunate and minimizing metaphors like brain fog.
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Cognitive impairment is the most general description that covers everything from stroke to intoxication. And the influence is probably external to the thinking machinery - something is continuously messing with how it works, even though it is internal to the person. It is also affected by external factors, like how it can worsen from PEM from things outside your control.

Damage is inaccurate because it implies permanence that we don’t known if is there.

I prefer cognitive impairment without intellectual deficits. Or just problems thinking clearly and quickly.
 
Utsikt said:
Damage is inaccurate because it implies permanence that we don’t known if is there.
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A bruise is damage and it isn't typically permanent.

Utsikt said:
I prefer cognitive impairment without intellectual deficits. Or just problems thinking clearly and quickly.
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Sure, but cognitive impairment is downstream to brain damage. Besides, both brain damage and cognitive impairment are reflective of a range, a spectrum. Some of us suffer them to a greater degree than others within our own ME/CFS community - and certainly some endure intellectual deficits. These are problems that extend well beyond clarity and processing speed. They can include deficits across cognitive domains
 
I use the term cognitive deficiencies which is closely linked to disruption in brain energy metabolism. That's the the term I used to describe my cognitive issues to my GP. I also included "lack of blood flow to the brain feeling" to describe orthostatic impairment because I wasn't sure if I actually have lower blood flow to my brain.
 
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