The optic nerve in ME/CFS

AliceLily

AliceLily

Senior Member (Voting Rights)
With so much reading at the moment regarding the neurology it has made me think more about the affect the nervous system is having on the optic nerve in our eyes. How many symptoms could we name that we experience that could be due to these changes.

I know I can actually feel something in my eyes, just like I can feel the brain fog.

I wondered whether we could make a list of symptoms, experiences that affect us with our eyes and try to sort out which ones would be to do with the optic nerve. As someone who is not medical I would find it interesting to understand what symptoms would be more likely attributable to the optic nerve.

I am guessing there would be mainly only two systems, the nervous system and muscular system. Would there be any other system involved with the eyes?

I will come back over the weekend, a few days time and start doing a list of symptoms I have experienced but in the meantime it would be great if others could start a list of their eye symptoms in ME. Things like difficulty walking down steep stairs. Hopefully someone can help us sort out what would be to do with the optic nerve or more something else.
 
I had some crashes that I assume relate to something weird going on in the optics system:
- being a passenger in a car, just looking outside at the fast moving objects —> instant crash
- standing up, staring (very focused!) at a point at the ceiling 180° up, then staring at a point at the ground 180° down, then staring at the point on ceiling 180° up again—> instant crash.
 
AliceLily said:
I will come back over the weekend, a few days time and start doing a list of symptoms I have experienced but in the meantime it would be great if others could start a list of their eye symptoms in ME. Things like difficulty walking down steep stairs. Hopefully someone can help us sort out what would be to do with the optic nerve or more something else.
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I would be cautious about trying to link a list of symptoms to ME/CFS. As far as we know there are no eye symptoms as part of ME/CFS. But people with ME/CFS will have eye symptoms for 101 other reasons.

By and large there are no symptoms of optic nerve problems other than gaps in vision (blind spots). Like most of the brain, it does not sense its own condition but carries signals from receptors sensing things elsewhere.

If there was anything significantly wrong with optic nerves in ME/CFS I think we would know about it because people notice if they have blind spots.
 
AliceLily said:
With so much reading at the moment regarding the neurology it has made me think more about the affect the nervous system is having on the optic nerve in our eyes. How many symptoms could we name that we experience that could be due to these changes.

I know I can actually feel something in my eyes, just like I can feel the brain fog.

I wondered whether we could make a list of symptoms, experiences that affect us with our eyes and try to sort out which ones would be to do with the optic nerve. As someone who is not medical I would find it interesting to understand what symptoms would be more likely attributable to the optic nerve.

I am guessing there would be mainly only two systems, the nervous system and muscular system. Would there be any other system involved with the eyes?

I will come back over the weekend, a few days time and start doing a list of symptoms I have experienced but in the meantime it would be great if others could start a list of their eye symptoms in ME. Things like difficulty walking down steep stairs. Hopefully someone can help us sort out what would be to do with the optic nerve or more something else.
Click to expand...
I have researched vision issues a lot because they are some of my most disabling symptoms, although this is largely due to my having visual snow syndrome on top of ME.

The optic nerve is just one part of the visual pathway — the other parts are the eyes (the retina, in particular), and everything else going on in various parts of the brain's visual system. I don't think we have any reason to believe the optic nerve, as opposed to other parts of the visual pathway, is the source of any problems in ME. You can visualise the optic nerve quite well in routine eye exams and in other imaging.

Braganca said:
My optic nerve looks normal on ophthalmology tests and MRI despite major vision distortion.
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Yes, this is quite typical. My optic nerve always looks perfectly fine despite extremely disabling visual symptoms. I think we would know now if there was an issue with the optic nerve, per se, in ME.

I don't exaclty know what you mean by difficulty walking down steep stairs, but this does not immediately strike me as an issue with vision or the optic nerve. This is much more likely to be a neurological problem with assimilating different sensory data, and proprioception. There are some interesting discussions here about proprioception.
 
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Jonathan Edwards said:
I would be cautious about trying to link a list of symptoms to ME/CFS. As far as we know there are no eye symptoms as part of ME/CFS. But people with ME/CFS will have eye symptoms for 101 other reasons.
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I think my eyes themselves are totally fine and they test as perfect vision.

What’s broken is the way my brain is interpreting the visual information. My vision is like being in a dream or stoned. This is reported by a lot of people, including newbies with long Covid, so I do wish researchers would look at it as a clue in what brain tissue or area.
 
Vision processing may take a lot of energy- if your body's balancing out energy/ function perhaps it's just underpowered. Vision does get worse when my daughter's feeling worse. It's annoying as not being able to see properly tends to put her body on " alert" , so counterproductive.
 
This paper is about how the brain reduces encoding of visual information in a starvation scenario for mammals — essentially going into lower power mode and producing a less precise image. This feels a lot to me like what’s happening with my vision processing. It’s like a glitchy computer or TV screen where signal is going.

When I read it, I had seen a Norwegian researcher Prof Tronstad present evidence that ME patients had metabolic changes similar to if we were in a semi-fasted state, and I wondered if there is a connection there.
www.eurekalert.org

ME associated with cellular energy strain

Professor Karl Johan Tronstad at the University of Bergen has supervised a study which found biochemical changes in the blood of ME patients. The results support the hypothesis that the disease involves impaired cellular energy metabolism.
www.eurekalert.org

And then I also thought this was interesting about vision changes in hibernation.. https://www.quantamagazine.org/mitochondria-double-as-tiny-lenses-in-the-eye-20220405/
 
«feeling something in the eye» might not actually be eye related. You don’t feel the increased pressure in glaucoma for example.

I have lots of visual glitches that the eye doctor said was fine and the neurologists didn’t care about. People with migraine have visual symptoms without damage to the eye.

Those symptoms can be caused by damage as well, so I think the general recommendation by docs is to have it checked out, especially if there are changes to the symptoms.
 
I think another way people with very specific ME vision problems describe them is that it’s a feeling of depersonalization or derealization and that’s likely too bc it goes along with strong brain fog. Vision feels like you’re in a dream, not in reality, or behind glass.

I can actually see properly in that I can see everything in front of me but it’s not normal vision. It’s very hard to describe.

This is not same as floaters / spots or pain which are other symptoms people describe.
 
Braganca said:
What’s broken is the way my brain is interpreting the visual information. My vision is like being in a dream or stoned.
Click to expand...

That sounds like a problem in the brain itself. Unfortunately, it could arise from changes in all sorts of places and I think it would be hard to study. We do not know where in the brain visual images are displayed to brain cells.
 
Jonathan Edwards said:
That sounds like a problem in the brain itself. Unfortunately, it could arise from changes in all sorts of places and I think it would be hard to study. We do not know where in the brain visual images are displayed to brain cells.
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The more I learn about how little we understand the brain, the angrier I get at the doctors and psychologists who were so confident that this symptom was just a manifestation of anxiety.
 
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Jonathan Edwards said:
That sounds like a problem in the brain itself. Unfortunately, it could arise from changes in all sorts of places and I think it would be hard to study. We do not know where in the brain visual images are displayed to brain cells.
Click to expand...
But in the paper I shared from Cell, it talks about the “primary visual cortex”, which ChatGPT tells me refers to brain tissue, not the eye.

From ChatGPT: Specifically, it is the region called V1 (also called the striate cortex) located in the occipital lobe at the back of the brain. It is the first cortical area that receives and processes visual information coming from the eyes via the retina → optic nerve → thalamus (lateral geniculate nucleus) → V1 pathway. When they mention the “primary visual cortex,” they mean neurons in that cortical brain region, not structures inside the eye itself.

The article below by same authors talks about how Energy-efficient neural coding enables the brain to operate at a lower energy cost.. which to me resonates as what could be happening with ME patients who’s brains are not properly processing visual inputs. Theyir brains are running on low power mode. Isn’t this a clue as to which tissue the geneticists should be looking at in the brain? This vision problem is a huge disabling part of MECFS for many of us. Tagging @James Cox

Here’s an article on the paper:
 
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