Well, if you didn’t catch part one, of this three part series, you can do so here . Now on to what I dug up on Post Traumatic Vision Syndrome or PTVS.
The earliest article on visual issues in ME/CFS that I could find (with the help of my friend Laurel: hap tip!) was this one back in 2001 by the CFIDS Association. In it they explain that,
There are few references in the literature to visual and/or ocular disturbances in chronic fatigue syndrome (CFS), even though visual symptoms are common. Ocular symptoms have been quantified, and are significantly more common than in control groups.1
The ocular signs and symptoms of CFS have not been considered to be a major part of this condition in the past, yet it becomes very obvious when working with these patients that the ocular system is very much affected by, and in turn affects, this systemic condition. [Source 1]
I find it interesting, to say the least, that I (we are) am now ten years out from the date of this article and I still cannot find any new information about the re-occurring eye issues that pwcs (people with ME/CFS) deal with.
What a sad essay on ME/CFS reserach that is. Why wouldn’t researchers be looking at the neurological and eye connection issues in ME/CFS? That would seem a logical step to me.
If the eye issues didn’t pose a major threat in about 25% of the ME/CFS population, and potentially anyone with ME/CFS, then maybe I could understand research not focusing on this particular problem. However, the opposite appears to be true. According to the CFIDS Association of America in their 2001 article, they state that,
In many cases almost all of these symptoms occur, producing varying degrees of disability. These patients have sensory intolerance and appear to have a degree of inability to suppress background sensory events from reaching a distracting level in consciousness.[Source 1 ]
So, not only do our bodies have the potential for disability, but our eyes do as well! For me personally, with the eye issues I have been struggling with, I would have to agree with this assessment.
When my eyes wig out, it’s akin to what a computer does when it can’t process the information it is being asked to process … it crashes. That is exactly what it feels like when my eyes (and brain apparently) struggle to process the information my eyes see!
This article also goes on to re-iterate that the problem with the eyes isn’t just an eye malfunction, but that it is also a brain malfunction because,
[…] the source of the problem may lie in the brain and not the eyes themselves [….] [Source 1]
According to William Padula, OD, neuro-optometrist and head of the Padula Institute of Vision Rehabilitation in Guildford, Connecticut, ME/CFS sufferers
[…] have in essence suffered a neurological event that affects their vision similar to traumatic brain injury or multiple sclerosis [….]. [Source 1]
According to Dr. Padula, Post Traumatic Vision Syndrome or PTVS in ME/CFS is the result of a possible,
[...] dysfunction in the part of their brain that controls the ambient visual process, which lets us know where we are in space and provides information used for balance, conly if the eye is fixed directly on itoordination and posture.
Ambient visual nerve fibers from the peripheral retina are relayed to the midbrain, where they become part of the sensory-motor feedback loop. Even when the eye is fixed on an object in the visual field, the ambient process is feeding information from the peripheral vision to the brain to help it make sense of what it sees.
When the ambient visual system is damaged, patients’ peripheral vision no longer helps them stabilize and orient images in the same way, and they have to rely more heavily on their focal processing system. The focal processing system uses only the macular area of the retina instead of the peripheral nerves. It feeds information to the brain about an object . [Souce 1]
Now that really helps me understand why I have such a hard time shopping or eating out in noisy, crowded restaurants! I’m not only feeling overwhelmed but my brain which relays the information to other organs (such as my eyes) is also overwhelmed. This kind of makes me wonder if this is where the flight or fight we struggle with comes into play. It would make sense, I think.
According to a CFIDS Association article on the same issue,
[...] people with CFS (PWCs) can experience other symptoms that are unrelated to structural problems in the eyes and optic nerve, and actually arise from trouble with the visual process. These may include: . [Bold my emphasis] [Source 2]
Hmmmm…Well, I definitely experience quite a few of those symptoms: balance, dizziness, photophobia, print moving or appearing when reading, not good in crowds, busy environments, panic attacks…Yup. That definitely sounds like what I do. What about you?
In PTVS, the ambient visual process . When that process is derailed, the person becomes “focally bound,” or overly fixated on visual details, and has to work harder to use his/her vision. The extreme effort and intensity required to use the focal visual process leads to visual fatigue, headaches and eyestrain. [Bold my emphasis] [Source 2]
This is something I am now struggling with as well. When I see to many things on a page, whether it be the color of the page and the words plus paragraph layout, or the multiple pop-ups, ads, page colors, contrasting of white page and black ink, etc, my brain can process the information and my eyes can handle it and they crash.
Something esle that I found amazing was the concept that PTVS is already a documented dysfunction. Yet, again, hardly any information, discussions, or research are occurring on the subject (that I have found at this point of my research). In addition, it is believed to be quite common in PWCs (people with ME/CFS).
Lastly, one more explanation of how PTVS affect ME/CFS sufferers. It,
[…] can also cause individuals to visually fixate on individual letters instead of words when reading, and to This causes words to appear to jump and move about the page as the person attempts to read. It can also cause the ) that some PWCs experience. [Source 2]
Okay. That really hit me. Can cause us to have difficulty ‘releasing’ or moving their vision away from letters and words! I have that happen so often. It’s like my eyes get stuck and I usually find myself adverting my eyes, shaking my head or changing my head position so I can disengage with the text.
PWCs with PTVS also find it more difficult to They identify people walking around in their peripheral vision as detail that soon becomes confusing.
In some cases, persons with severe dysfunction of the focal and ambient visual process due to the way that their visual world is being re-ordered.
So there you have it. There is a name for the eye disturbances, dysfunction and disconnect that many of us are struggling with. It is not just eye fatigue or stress. It is another consequence of a brain that is not functioning properly.
In addition, perhaps some of the flight or fight symptoms we are experiencing we can now attribute to the the mis-connect of our brain and eyes … or our brain and any other organ. In essence, our body is literally not properly connected to our brain.
Tomorrow (Monday) I will share different way that I am currently trying to manage my eye issues plus some suggestions that are currently part of the protocol in dealing with PTVS. I will also do a follow up issue after I see my eye doctor.