Visual Disturbances in ME

 

Visual Disturbances in

Myalgic Encephalomyelitis (ME)

Visual issues in ME are frequently discussed and may have a significant impact on the quality of everyday life for the ME patient. Some people have to stop driving, or find reading or watching television to be a problem.

Symptoms/features as reported by People with ME

Staring

Inability to focus vision (mentioned pg 7, 9 International Consensus Primer)

Zigzag lines across vision

Out-of-focus vision

Eye floaters

Impaired depth perception

Tracking issues

Poor spatial recognition

Fuzzy/ blurred vision

Double vision

Tunnel vision

Night blindness

Depth of field loss

Early cataracts

Eye pain

Dry eyes (do not hold tear film)

Itching eyes

Burning eyes

Flashing eyes (open or shut)

Seeing pinpoints of light in the dark

Aura-like blur around edge of vision

Light sensitivity (photophobia)

Reading fatigue

Eye movement fatigue

Vision related headaches following reading

The De Paul Symptom Questionnaire, the DSQ-2 which is based on research includes questions based on visual issues in ME, i.e., Eye pain, Sensitivity to bright lights, Unable to focus vision, Loss of depth perception, Blurred or or tunnel vision after standingtunnel vision after standing, Aching of the eyes or behind the eyes

The questions raised are below:

From the De Paul DSQ-2 Symptom Questionnaire

Q27. Eye pain

Q35. Sensitivity to bright lights

Q41. Unable to focus vision

Q43. Loss of depth perception

Q70. Blurred or tunnel vision after standing

Q81. Aching of the eyes or behind the eyes

From the De Paul DSQ-2 Symptom Questionnaire

 

and one number for severity

De Paul Symptom & Severity Questionnaire, DSQ-2

Blog Piece by Person with ME who Suffers Visual Disturbances

“In September 2010 it was my vision that ‘went funny’ first; my very first sign that something was off. It has been my most dominant and consistent symptom ever since.

It’s so hard to explain how it is, and the photos on this post are the closest I can get to showing what I see:

Blurred vision

Zigzag lines across my vision

Out-of-focus vision

Eye floaters

White flashes behind closed eyes

Eyelids that flicker when closed

A constant aura-like blur around the edge of my vision

I do also have a diagnosis of ‘migraine with aura’ and initially assumed I must be getting a migraine. But it is quite different, not least because I lose my vision completely when I get a migraine.

No tests have showed up anything untoward. I’ve need glasses since I was 7 and need a strong prescription. But with a correct prescription and regular checks all that’s been said is that if M.E. is affecting every muscle and every cell in the body, then the muscles and cells in my eyes must also be affected.

I often don’t notice it now, but since December it’s been harder to ignore. I’m begrudgingly going back to the optician next week* (my first port of call because a GP always sends me back there so I’m preempting it again).”

 

by Anna Redshaw writer of The Slow Lane dot Com

Depiction of constant aura-like blur around the edge of vision from The Slow Lane dot Com by Anna Redshaw

What is happening to eyesight as a result of ME and is there any research in this area? 

The Science Behind Visual Disturbances

People with ME often report problems with their eyes and vision but the mainstream scientific literature rarely mentions it. In order to redress the balance, the Vision and Language Research Group, University of Leicester with funding from ME Research UK and the Irish ME Trust tried to identify and quantify vision-related problems in ME.

A 2013 scientific paper presents the first of their findings, more here:

https://www.meresearch.org.uk/research/abnor

mal-visual-attention/

For more on visual issues in ME see 2018 paper from Frontiers: https://www.frontiersin.org/journals/psychology/articles/10.3389/fpsyg.2018.01468/full

The results published in 2018 indicate that basic eye movements to simple static targets are less accurate in people with ME and that moving eyes for even short periods of time induces eye-movement fatigue. This type of ophthalmological testing has helped to confirm that people with ME have a range of problems related to visual attention that are consistent with their self-reported symptoms.

"Visual symptoms in ME represent a group of distinct, quantifiable, clinical features that could significantly improve diagnosis and provide insights into underlying pathology. The purpose of the present study was therefore to explore the effect of ME on spatial windows of visibility using the spatial contrast sensitivity function."

Disability Claim (US) Concerning Visual Disabilities

In 2018, Brian Vastag, a journalist, previously with the The Washington Post, advocate, and person living with ME, was able to prove with qEEG and cognitive tests he had "significant problems with visual perception and analysis, scanning speed, attention, visual motor coordination, motor and mental speed, memory, and verbal fluency" winning his long term disability (LTD) claim; more here:

https://www.meaction.net/2018/06/04/victory-for-me-disability-claim-court-upholds-plaintiffs-lawsuit-after-being-denied-disability/

Our advice would be to always get any new symptom/issue checked out by a medical expert/optician.

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